bmj openfor peer review only 2 abstract background and objective: the birth of a pre-term infant can...

For peer review only

A systematic review of effective interventions for communicating with, supporting and providing information

to parents of pre-term infants

Journal: BMJ Open

Manuscript ID: BMJ Open-2010-000023

Article Type: Research

Date Submitted by the Author:

15-Nov-2010

Complete List of Authors: Brett, Jo; Warwick University

Staniszewska, Sophie Newburn, Mary; Warwick University Jones, Nicola; Warwickshire NCT Pre-term Support Group Taylor, Lesley; National Childbirth Trust

<b>Subject Heading</b>: Paediatrics

Keywords: NEONATOLOGY, Community child health < PAEDIATRICS, Social Health

Abstract:

Objective: To identify effective communication with, supporting and providing information for parents of pre-term infants Design: Systematic review Data sources: Medline, Embase, PsychINFO, the Cochrane library,

CINHAL, MIDIRS, HMIC, and HELMIS. Hand-searching of journals. Studies reviewed: 74 papers identified, 20 papers were randomised controlled trials, 16 were cohort or quasi-experimental studies, 16 were qualitative studies and 22 were other descriptive studies. Results: Interventions for supporting, communicating with, and providing information to parents that have had a premature infant are reported. Parents report feeling supported through individualised developmental and behavioural care programmes, through being taught behavioural assessment scales, and through breast feeding, kangaroo care and baby massage programmes. Parents also felt supported through organised support groups and through provision of an environment where parents can meet and

support each other. Parental stress may be reduced through individual developmental care programmes, through psychotherapy, through interventions that teach emotional coping skills and active problem solving, and journal writing. Evidence reports the importance of preparing parents for the

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BMJ Open


neonatal unit through the neonatal tour, and the importance of good communication throughout the infant admission phase and after discharge home. Providing individual web-based information about the infant, recording doctor-patient consultations, and provision of an information binder may also improve communication with parents.

The importance of thorough discharge planning throughout the infant’s admission phase and the importance of home support programmes are also reported. Conclusion: The paper reports evidence of interventions that help support, communicate with and inform parents who have had a premature infant throughout the admission phase of the infant, discharge, and returning home. A summary of interventions from the available evidence is reported.

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A systematic review of effective interventions for

communicating with, supporting and providing information to

parents of pre-term infants

Jo Brett*, Sophie Staniszewska,* Mary Newburn,** Nicola Jones,*** Lesley Taylor **

* Royal College of Nursing Research Institute,

School of Health and Social Studies,

University of Warwick, Coventry, CV4 7AL

Tel: 024761 50622

[email protected]

[email protected]

** National Childbirth Trust

Alexandra House, Oldham Terrace, London

W3 6NH

Tel: 0844 243 6000

[email protected]

[email protected]

*** Warwickshire NCT Pre-term Support Group

No fixed address

[email protected]

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mailto:[email protected]



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Abstract

Background and Objective: The birth of a pre-term infant can be an overwhelming

experience of guilt, fear, and helplessness for parents. Provision of interventions to

support and engage parents in the care of their infant may improve outcomes for both the

parents and the infant. The objective of this systematic review is to identify effective

interventions for communication with, supporting and providing information for parents of

pre-term infants.

Design: Systematic searches were conducted in the electronic databases

Medline, Embase, PsychINFO, the Cochrane library, CINHAL, MIDIRS, HMIC, and

HELMIS. Hand-searching of reference lists and journals was conducted. Studies were

included if they provided parent-reported outcomes of interventions relating to information,

communication, and/or support for parents of pre-term infants prior to the birth, during care

at the NICU, and after going home with their pre-term infant.

Studies reviewed: 74 papers identified, 20 papers were randomised controlled trials, 16

were cohort or quasi-experimental studies, 16 were qualitative studies and 22 were other

descriptive studies.

Results: Interventions for supporting, communicating with, and providing information to

parents that have had a premature infant are reported. Parents report feeling supported

through individualised developmental and behavioural care programmes, through being

taught behavioural assessment scales, and through breast feeding, kangaroo care and

baby massage programmes. Parents also felt supported through organised support

groups and through provision of an environment where parents can meet and support

each other. Parental stress may be reduced through individual developmental care

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programmes, through psychotherapy, through interventions that teach emotional coping

skills and active problem solving, and journal writing.

Evidence reports the importance of preparing parents for the neonatal unit through the

neonatal tour, and the importance of good communication throughout the infant admission

phase and after discharge home. Providing individual web-based information about the

infant, recording doctor-patient consultations, and provision of an information binder may

also improve communication with parents.

The importance of thorough discharge planning throughout the infant’s admission phase

and the importance of home support programmes are also reported.

Conclusion: The paper reports evidence of interventions that help support, communicate

with and inform parents who have had a premature infant throughout the admission phase

of the infant, discharge, and returning home. A summary of interventions from the

available evidence is reported.

Article focus:

A systematic review to identify and synthesize evidence of effective interventions for

communicating with, supporting and providing information for parents of pre-term infants.

Key messages:

• The review highlights the importance of encouraging and involving parents in the

care of their pre-term infant at the neonatal unit to enhance their ability to cope with and

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improve their confidence in caring for the infant, which may also lead to improved infant

outcomes and reduced length of stay at the neonatal unit.

• Interventions for supporting parents included: 1) involving parents in individualised

developmental and behavioural care programmes (e.g. COPE, NIDCAP, MITP) and

behavioural assessment programmes; 2) breastfeeding, kangaroo care and infant

massage programmes; 3) support forums for parents; 4) interventions to alleviate parental

stress; 5) preparation of parents for various stages, for example seeing their infant for the

first time, preparing to go home; 6) home support programmes.

• Involving parents in the exchange of information with and between health

professionals is important, with various modes of providing this information reported, for

example ward rounds with doctors, discussion around infant notes, websites, and hard

copy information.

Strengths and limitations of study:

Strengths

This is the first review to synthesize the evidence of interventions to support parents of

pre-term infants through improved provision of information, improved communications

between parents and health professionals and alleviation of stress at all stages of a

parents journey through the neonatal unit. It highlights relatively inexpensive interventions

that can be integrated into their pathway through the neonatal unit and going home,

enhancing parental coping, and potentially improving infant outcomes and reducing the

infants length of stay at the neonatal unit.

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Limitations

The quality of the evidence that this review reports is variable, and includes all types of

study designs.

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Introduction

While medical advances mean that very premature neonates have an increasingly

better chance of survival, the impact of this experience on the child and their parents

cannot be underestimated. The birth of a pre-term infant can be an intensely stressful,

confusing and difficult time for parents and families(1). Approximately 80,000 pre-term

infants are born in the UK each year, and 22,000 of these will be cared for in the neonatal

intensive care (NICU) (2,3). Evidence shows that family-centred care on the neonatal unit

can reduce the length of the child’s stay on the neonatal unit(4,5,6), reduce the rate of re-

admittance to hospital(7), and improve the outcomes of the baby with regards to

morbidity(8).

The Parents of Premature Babies (POPPY) study aims to develop a better

understanding of the experiences of a range of parents with pre-term babies, particularly

with regards to the communication, information and support they received on the NICU,

ensuring that the perspectives of parents are at the heart of the study. This paper reports

the results of the first phase of the POPPY study, which takes the form of a systematic

review to identify effective interventions for communicating with, supporting and providing

information for parents of pre-term babies.

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Methods

Systematic searches were undertaken for the period of January 1980 to October

2006 in the following databases: Medline, Embase, PsychINFO, the Cochrane library,

CINHAL, MIDIRS, HMIC, and HELMIS. A combination of text terms and MeSH terms were

used to maximise the volume of literature retrieved. Grey literature was sought from

specialists in the field, and the following journals were hand-searched from 1990 onwards

for all relevant English language articles: Neonatal Network Journal, Journal of Neonatal

Nursing and Journal of Obstetric, Gynecologic, and Neonatal Nursing. Update searches

were undertaken in October 2009.

Studies were included if they provided parent-reported outcomes of interventions

relating to information, communication, and/or support for parents of pre-term infants prior

to the birth, during care at the NICU, and after going home with their pre-term infant.

Furthermore, it was felt that the systematic review should be inclusive of all study

designs as it is often not feasible or appropriate to conduct randomised control trials

(RCTs) or other intervention studies on the outcomes for parents that were measured. It

was deemed therefore that, despite the potential bias inherent in descriptive studies, the

results of these studies nonetheless gave an important insight into parent-related

interventions and should be included in this review.

The data extraction form and quality assessment for inclusion criteria were based on the

guideline from the NHS Centre for Reviews and Dissemination (NHS CRD) (9) Initially, two

reviewers extracted data (JB, SS) independently for 20% of papers and disagreements

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were resolved by discussion with a third reviewer. There was a high level of agreement

between reviewers, so the remaining data was extracted by one reviewer and checked by

a second. Any disagreements were resolved by discussion with a third reviewer. The

quantitative studies covered a wide range of interventions and different methods of

assessment so it was not possible to carry out a meta-analysis. A non-quantitative

synthesis was conducted based on the extracted data. In the summary figure (Figure 3),

the included evidence was assessed using the Scottish Intercollegiate Guidelines

Assessment (SIGN) (10).

Search Results

Figure 1: The results from the literature search.

Seventy seven papers were included (four were deemed relevant in two of the

sections). Papers were excluded for a number of reasons including the fact that no parent

Search Results

19,866 original hits

3925 in update search

802 after title search

133 in update search

434 papers ordered, 42 from update searches &

3 papers from hand-searching

77 papers were included

22 RCTs, 16 Cohorts or quasi-experimental, 18 qualitative, 21 cross-sectional or case series

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outcome was identified, the study was irrelevant to neonatal services offered in developed

countries such as the UK (3), or the study was deemed to be inadequate after quality

assessment using NHS CRD guidance. (11)

Tables 1a and 1b report the data from the randomised control trials, quasi

experimental studies and cohort studies. Other evidence is reported in summary format

within the text .

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Table 1: Data extraction tables

1a. Randomised controlled trials:

Author (Year)

Country

Study design Intervention Outcome measure No of cases No. of controlsStatistically significant

Quality

(SIGN)

Als

2003

USA

RCT NIDCAP (Neonatal individualised Developmental

Care and Assessment Programme

PSI (Parental Stress Index)38 38 Hospital 1: I= 35.7 (sd 21.3)

C=44.9 (sd34.2)

Hospital 2: I=55.8 (sd28.8)

C=65.2 (sd27.5)


C=55.9 (sd22.5)

Group score ® = .41, p<.001

Summary: MANOVA: F=2.41, df=5.66, p<0.05

1++

Barrera

1986

Canada

RCT Teaching developmental care HOME

Parent-infant interactions

40 40 At 4 mths and 16 mths, mothers in the Parent-Infant intervention

group and full term control group were significantly better maternal

responsiveness and mother-infant interaction compared to the pre

term baby control group.

Manova:

Maternal rseponsiveness

I-7.32, FTC – 7.44, C- 6.41, f=6.78, p<0.001

Maternal involvement:

I=7.23, FTC-7.16, C-6.26, f=2.70, p<0.05

1-

Browne

2005

USA

RCT Family based intervention (Gp1: demonstration of

pre-term baby behavioural cues; Gp2:viewed

educational video and books about pre-term babies

Nursing Child Assessment

Scale (NCAFS) and

Knowledge of Preterm Infant

Behavior Scale (KPIB)

Gp1: 28

Gp2:31

25 Intervention group reported significantly greater sensitive interactions

with pre-term babies, and significantly greater knowledge of pre

babies than controls at 1 month after discharge

(NCAFS 45.65, 6.20vs. 47.43, 7.36 vs. 48.88, 7.41, p<0.05; mean

KPIB 23.32, SD 5.88 in group 1 vs. 25.90, 5.30, in group 2 vs. 19.58,

5.01 in group 3, p<0.001)

1+

Cobiella

1990

USA

RCT Two stress reduction programmes:

a) Video-tape training in active problem –

focussed coping strategies

b) Video-tape in emotion-focussed strategies to

manage anxiety

State-Trait Anxiety Inventory

(STAI), Depression Adjective

Checklist (DACL)

Gp. A – 10

Gp. B - 10

10 On post-treatment follow-up both the problem-focused and emotion

focused treatment groups were significantly less anxious than the

controls and lower levels of depression were observed for the emotion

focused group

STAI: PF-t(11)=2 71 p<0.01

EF-t2 56 p<0.02

DACL: PF – NS

1-

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EF-t(12)=2 36, p<0.03

Ferber

2004

Israel

RCT Baby massage: I= to receive 15 massages 3 times per day for 5 days

Gp1: mothers conduct massage

Gp2: Researchers conduct massage

Gp 3 controls

Coding Interactive Behavior

Assessment for newborn

Gp 1: 18

Gp2: 18

19 At 3 months, mothers of massaged infants were less intrusive,

interactions were more reciprocal.

Gp1: Dyadic reciprocity (DR) – 2.42+0.87

Maternal Intrusiveness(MI)-1.97+0.91

Gp2: DR – 2.46+0.99

MI – 1.68+0.63

Gp3: DR – 1.66+0.68

MI – 2.54+1.01

DR: F=4.69,p<0.01

MI: F=4.05,p<0.02

No significant difference in maternal sensitivity was reported.

1+

Glazebrook et al

2007

UK

RCT Nursing Child Assessment Teaching Scale (NCATS)

at neonatal unit, with optional follow-up

Parental Stress Index (PSI)

Home Observation for

Measurement of the

Environment (HOME)

99 111 No significant differences reported at discharge or at 3 months after

discharge.

1+

Hall 2002

Canada

RCT Weighing infant before and after feeds to assess

maternal confidence in breast feeding

Parental sense of competence

scale

Maternal confidence

questionnaire

Influence of specific referents

scale

30 30 No significant differences in maternal confidence or competence

between weighed or not-weighed infants

1-

Huckaby

1999

USA

RCT Photograph of baby given to mother to take with them

while baby on neonatal unit

Bonding Observation

Checklist (BOCL)

Physical Examination

Observation Checklist

(PEOCL)

20 20 Mothers with picture had significantly better scores on bonding

measure than those without picture (p<0.001 for BOCL and p<0.01 on

PEOCL)

1+

Kaaresen 2006 RCT Mother-Infant Transaction Program

The intervention consisted of 8 sessions shortly before

discharge and 4 home visits by specially trained

nurses focusing on the infant’s unique characteristics,

temperament, and developmental potential and the

interaction between the infant and the parents.

PSI 71 69 preterm

75 term

Early-intervention program reduces parenting stress in both mothers

and fathers during the first year after a preterm birth to a level

comparable to their term peers

Mothers 6 mths - total stress: 16.9 (5.2 to 28.5) .005

Mothers 12mths – total stress: 13.7 (1.6 to 25.9) .03

Fathers 12 moths – total stress: 14.8 (2.1 to 27.6) .02

1+

Koh

2007

Australia

RCT Recording doctors consultation Information recall

10 days, 4 months, 1 year

91% of mothers in the tape

group listened to the tape

(once by day 10, twice

months, and three times by 12

93 93 At 10 days and four months, mothers in the tape group recalled

significantly more information about diagnosis, treatment and

outcomes than control group.

10 days:1.35 (1.08 to 1.69) p<0.007, treatment 1.35 (1.00 to 1.84)

outcome 1.24 (1.05 to 1.47), p<0.009 than mothers in the control

group.

1+

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months; range 1-10).

4 months: diagnosis 1.27 (0.99 to 1.63) p<0.05, treatment 1.35 (1.00 to 1.84)

p<0.045, and outcome 1.75 (1.27 to 2.4), p<0.004 No statistically significant differences were found between the groups

in satisfaction with conversations (10 days), postnatal depression and

anxiety scores (10 days, four and 12 months), and stress about

parenting (12 months).

Lai

2006

Taiwan

RCT Effects of kangaroo care combined with music State-Trait Anxiety Inventory

(STAI)

15 15 Music during KC also resulted in significantly lower maternal anxiety

in the treatment group on day 3 of the interention (t (19.6) =−2.14,

p<.05). Maternal state anxiety improved daily, indicating a cumulative

dose effect (F(1.49,40.39)=5.81, p<.01). Anxiety levels in the control

remained unchanged

1+

Melnyk

2006

USA

RCT Creating Opportunities for Parent Empowerment

(COPE) - Information and behavioural activities

about appearance and behavioural characteristics of

preterm infants and how best to parent them.

Infant length of stay

Parental Stressor Scale (PSS)

State-Trait Anxiety Scale

(STAI)

Index of Parental Belief Scale

147 Mothers

81 Fathers

113 Mothers

73 Fathers

Mothers in the intervention group reported significantly less stress and

less depression and anxiety at 2 months after birth.

Anxiety: 28.72 (27.31-30.12) vs 30.83 (29.23-32.42)p<0.05

Depression: 5.56 (4.66-6.45) vs 7.21 (6.20-8.23)p<0.02

PSS: 3.29 (3.09-3.49) vs 3.58 (3.35-3.80), p<0.05

Parental Knowledge: 32(31.63-33.01)vs 30.50 (29.73-31.27)p<0.001

There were no differences found for Fathers anxiety or depressive

symptoms.

Infant length of stay at the NICU and at the hospital was significantly

lower in the intervention group (3.8 days less in NICU, 3.9 days less in

hospital p<0.05

1++

Meyer 1994 USARCT Family based intervention (Psychological intervention

for family, teaching care and behavioural cues of

baby, home discharge plan)

Parental Stressor scale (PSS)

Maternal self esteem

Inventory, Beck Depression

Scale (BDS), Family

Environment Scale

34 34 Intervention group reported significantly less stress (PSS) and reported

significantly less depression (BDS) at discharge.

BDI: Int: 11% vs. 44%, p<0.05; 39% vs 31% NS.

PSS: Int:2.4 ± 1.0; 2.0 ± 0.8 vs Con 2.4 ± 0.9; 2.6 ± 0.8 p<0.05

1+

Nurcombe

1984

USA

RCT Behavioural Assessment Scale: Mother-Infant

Transaction Programme (MITP)

Hereford Parent Attitude

Survey

Seashore Self Confidence

Rating Paired Comparison

Questionn-aire

37 36

Intervention group scored better on maternal adaptation (role

satisfaction, attitudes to child-rearing, self confidence) than low birth

weight controls (F(3, 87), p<0.030.

Univariate analysis:

Maternal satisfaction F (2,89), 4.55, p<0.013

Maternal attitude (2,89), 4.05, p<0.021

Maternal self confidence F (1,89), 7.44, p<0.008

Full term controls scored better than combined low birth weight group

(F [3,87], 3.27, p=0.025).

1+

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Parker-Loewen

1987

Canada

RCT 8 X 40 minute interaction coaching to encourage

sensitive responding by mothers

Satisfaction with Parenting

Scale

Knowledge of Infant

Development Scale

Life experiences survey

Interaction rating scale

35 35 No significant difference between treatment and control group on

interaction or knowledge of infant development or satisfaction with

parenting

1-

Spiker

1993

USA

RCT Home Support

(Infant Health and Development Program

(IHDP) – Home visits from discharge up to 36 months

Quality of assistance in

parenting pre-term baby

Supportive presence for

parents of pre-term infants

271 412 Intervention group reported significantly better quality of assistance

ratings than control group (I: 3.6 [1.5], vs 3.3[1.5], p<0.05), but no

significant difference on supportive presence was reported. Most

outcomes in this study were baby outcomes.

1-

Tessier

1998

Columbia

RCT Effects of Kangaroo care Mothers perception of

premature babies questionnaire

246 246 Kangaroo care significantly increased mother’s sense of compe

in mothering their baby (F(1481) 10.36, P .001), and was

significantly increased maternal sensitivity to their baby at the

neonatal unit. ( F(1481) 3.71, P .05).

This improved perception of their baby effect is related to a subjective

“bonding effect” that may be

understood readily by the empowering nature of the

KMC intervention. The study also reported a negative effect on the

feelings of received support from health professionals of moth-

ers practicing KMC (F 5.03, P .03).

Kangaroo care significantly reduced length of stay especially in lighter

babies. Two-way analysis of variance stratifying by birth weight showed that

the savings in hospital stays were clearly related to weight at birth: an

interaction effect ( F(3480) 4.06, P .01) shows that the maximum

saving in the KMC group was observed in infants weighing 1501 g

(4.5 to 6.7 days), whereas in infants weighing 1500g, the length of

hospital stay was virtually identical in both groups

1+

Van der Pal

2007

Netherlands

RCT NIDCAP PSI

Parents of Mother and Baby

Scale

Nurse Parent Support Tool

94 84 No significant differences were reported in Parental Stress Index,

Confidence of parents, or perceived nursing support at 1 to 2 weeks

after birth

1+

1b. Quasi- experimental and cohort Studies.

Author (Year)

Country

Study designIntervention Outcome measure No of cases No. of controStatistically significant results Quality

(SIGN)

Byers

2003

Cohort Co-bedding multiples in same incubator NIDCAP infant behaviour

State-Trait Anxiety Inventory

16 21 No significant results reported 2-

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USA Maternal Attachment

Inventory

Parental satisfaction tool

Byers

2006

USA

Cohort Family-centred care/developmental supportive careQuestionnaire developed for

study to measure parents

perceptions and satisfaction.

Study mainly reports baby

outcomes

57 57 No differences in parent perception or satisfaction with the neonatal unit 2-

Feldman

2002

Israel

Cohort Effects of Kangaroo care Mother-Infant interaction scale

Maternal depression

Mothers perceptions

HOME

73 73 At 37 weeks gestational age: After kangaroo care, interactions more positive, mothers

showed more positive affect, touch, adaptation to infant cues, infants more alertness and

less gaze aversion, mothers less depressed & viewed infants as less abnormal. Less

maternal depression [KC mean 6.68 (5.55) vs control 9.05 (4.27), F=5.68, p<0.05].

At 3 months corrected age: mothers and fathers of kangaroo care infants more sensitive

and provided better home environment.

KC Mothers provided a better home environment Manova at 3 months – HOME: Wilks F

(df=7,123), 2.99, p<0.01. KC fathers provided a better home environment – HOME:

Wilks F (df=7,110), 2.45, p<0.05.

At 6 months corrected age: kangaroo care mothers more sensitive (maternal sensitivity:

KC mean 4.20 (0.64) vs control mean 3.86 (0.76, univariate 5.36, p<0.05) & infants

scored higher on Bayley Mental Development Index (96.39 vs. 91.81, p<0.01) and

Psychomotor Development Index (85.47 vs. 80.53, p<0.05)

2+

Finello

1998

USA

Cohort Home Support

Gp1: Home healthcare and home visitng

Gp2: Home healthcare only

Gp3: Home visiting only

1 week after discharge:

HOME

CES-D

FACES II

6 mths after:

HOME

12 months:

CES-D, FACESII

HOME

?

81 in total

? Interventions improved the home environment (at 1 month, mean HOME 27.2, SD 6.0 for

group 1 vs. 24.2, 2.7 for group 2 vs. 30.0, 6.2 for group 3 vs. 22.7, 3.3 for group 4,

p<0.001; at 6 months, 33.7, 5.9 vs. 30.2, 4.3 vs. 34.4, 4.3 vs. 28.9, 5.0, p=0.003; at 12

months, 35.2, 5.2 vs. 31.2, 3.8 vs. 35.6, 5.3 vs. 30.5, 5.0, p=0.005). No difference between

groups on FACES II at 1 or 12 months, or on maternal parenting satisfaction. The latter

was more strongly associated with reports of support from husband (p<0.001), friend

support (p<0.001) and family support (p<0.001). Mean depression score at 1 month 18.5

(SD 11.59, range 0-48 on a total scale range of 0-60; 16 considered cut-off for clinical

depression (no differences between groups). Mean CES-D at 12 months 19.76, SD 10.21,

range 2-42, still indicating clinically significant levels of depression.

No other significant results were reported.

2+

Jotzo

2005

Germany

Cohort Psychological intervention to reduce stress at neonatal

unit (One off psychological intervention to help parents

cope with stress)

Questionnaire:

Impact of events scale (IES)

Trauma experiences measure

25 25 Mothers in intervention group had significantly lower traumatic impact from preterm birth

(lower overall symptoms: traumatic impact I 25.2 (SD 13.9), C 37.5 (SD 19.2), mean

difference 12.28 (2.74-21.82, p=0.013; lower avoidance I 7.7 (SD 5.3), C 12.4 (SD 8.4),

mean difference 4.65 (0.67-8.69), p=0.023 and hyperarousal, I 5.9 (SD 4.7), C9.5 (SD

5.7), mean difference – 3.56 (0.61 – 6.51), p=0.019; lower intrusion symptoms but not

significant). Control group: 76% of mothers showed clinically significant psychological

trauma at discharge vs. 36% (p<0.01) in intervention group.

2+

Kurz 2002

Austria

Cohort Home support (Phone call and counselling of parents after

returning home) for parents of babies with monitors

Questionnaire about monitor

use, stress reported by monitor

90 70 Home monitoring considered reassuring for 60% of families. After intensive counselling

introduced, parents liked the instruction better (74% vs. 44% very satisfied; 24% vs. 51%

2+

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use, and satisfaction satisfied; 2% vs. 5% not satisfied, p<0.005)), were less stressed by the monitor (42% vs.

63% stressed by false alarms, p<0.05) and reacted less aggressively to monitor alarms

(8% vs. 24% reacted by vigorously shaking or lifting baby, p<0.05); used monitor mainly

during sleeping periods; used monitor for less time (6.1 months vs. 7.6 months, p<0.05).

Counselling did not reduce anxiety.

Leonard

1989

USA

Cohort Educational support programme for infants on home

monitors (Infant Apnea Evaluation Programmes (IAEP)L

Gp1 – with home monitoring

Gp2- no home monitoring

Gp3 – healthy term babies

Symptom checklist-90,

schedule of recent events,

satisfaction - all in interview 2

wks after going home

Gp1-40 Gp 2- 30

Gp3 - 32

Psychological symptoms highest in parents of non-monitored premature infants (M

0.2845 [0 – 0.82] vs , NM – 0.4507 [0-1.3], p=0.037 ); particularly fathers of non-

monitored infants scoring high on depression (0.6846)).

Support highest in monitored infants (p=0.005)

NS on family satisfaction

.

2+

Lindsay

1993

USA

Cohort Parent to Parent Peer support for parents with critically ill

pre-term babies.

Parent report ? ? Numerical data not reported in paper

Reported benefit to parents: emotional support + Information support

2-

Ortenstrand

2001

Sweden

Cohort Early discharge with domiciliary nursing care

Domiciliary nurse made an individual care and discharge

plan together with the parents. During these planning

sessions, parent’s knowledge of how to care for their pre

term infant were checked and supplemented. The nurse

was available for home visit/ telephone consultation from

Monday to Friday, and at weekends parents could contact

the neonatal ward

STAI 40 35 No differences in mothers’ Trait anxiety at 1st or 2nd assessment. State (situational)

anxiety lower for EDG mothers at 1st assessment (EDG 30.9 [SD 6.2] vs. CG 36.6 [8.4],

p<0.01.

Fathers showed a significant difference in trait anxiety at both 1st and 2nd study time

period (30.1 (5.8) vs 33.5 (7.7), p<0.05, but only a significant difference in state anxiety

at the 1st assessment (29.5 [5.4] vs32.8 [9.1], p<0.08.

At 1 yr, no difference in recollection of anxiety in caring for the infant or in experiences

of mental imbalance related to the birth of the infant

2+

Penticuff

2005 USA

Cohort Discussion around Infant progress chart Comprehension of infant

medical condition and

satisfaction with collaboration

with health professionals while

baby at neonatal unit

77 77 Intervention group had fewer unrealistic concerns (ANOVA): (4.32 (0.86) vs 8.56 (0.57),

p<0.018; less uncertainty about the infant medical condition 1.92 (0.30) vs 3.52 (0.54), p<

0.003; had less decision conflict 45.88 (2.33) vs 59.10 (2.32), p<0.001; more satisfaction

with medical decisions process 120.20 (4.07), 104.95 (4.33), p<0.012; more satisfaction

with decision input 33.44 (1.30) vs 30.05 (1.21), p<0.058.

No significant difference was reported in satisfaction of care for the infant by HC staff,

and in satisfaction with decision made.

2++

Piecuch

1983

USA

Cohort videophone No. of calls made to neonatal

unit while baby at unit

17 17 Mean number of telephone calls to NICU used as proxy for interest in newborns. Mothers

with access to videophone made more calls: (1.0 vs. 0.2, p< 0.05) when mothers

hospitalised; (0.9 vs. 0.3, p<0.05) when mother discharged. Mothers appreciated

videophone; relieved at being able to see infants; infant’s condition not as bad as they had

imagined; many talked to infant even though only viewing an image; wanted to see close

ups of hands and feet as well as face.

2 -

Preyde

2003

Canada

Cohort

Parent to Parent Peer Support Parental Stressor scale (x)

Sate-Trait Anxiety Scale

(Spielberger)

32 28 Intervention group better scores on all measures at 4 or 16 weeks (groups were equivalent

at baseline), e.g. mean PSS score 1.54 (1.3-1.7) in intervention group at 4 weeks vs. 2.93

(2.7-3.1) in controls, p<0.001

2++

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At 4 weeks mean PSS score was significantly less in the intervention group – 1.54 (1.3

1.7) vs 2.93 (2.7-3.1), p<0.001.

At 16 weeks mean anxiety score, mean depression score, and perceived support were

significantly less in the intervention group: anxiety - 31.4 (27.2-35.4) vs 38.6 (34.6

p<0.05; depression - 2.20 (0.89-3.60) vs 4.88 (3.51-6.17), p<0.01; perceived support

6.49 (6.02-6.82) vs 5.48 (5.09-5.94), p<0.01.

There were no different in trait anxiety between the groups at any time period.

Rauh

1990

USA

Cohort Vermont Mother-Infant Transaction Programme (teach

parents to appreciate infants unique characteristics. teach

behavioural cues, teach parents to respond to infant,

enhance mothers enjoyment of baby).

Maternal Role Satisfaction

questionnaire

Self-Confidence rating

Parent Attitude scale

40 41 At 6 months: significantly better intervention effects for maternal role satisfaction, self

confidence and perception of infant temperament in intervention group; no difference on

maternal attitudes to child-rearing. Data not given in paper.

2-

Resnick 1988 USACohort Educational developmental Intervention Programme at

home – teach parents to use: parent’s voice tape, massage,

passive range of motion, exercises) and twice-monthly

interventions at home by child development specialists

through 12 months adjusted age (e.g. language and social

skills enrichment exercises, cognitive development, motor

exercises, parenting activities)

Greenspan-Lieberman

Observations System (GLOS)

to analyse infant-caregiver

interactions at 6 and 12 months

21 20 Parent child positive verbal scores significantly higher in treatment than control groups

(2.91 vs. 2.08), p=0.02. Intervention group dyads had fewer negative verbal interactions

(0.07 vs. 0.17, p=0.03).

The developmental intervention benefited the quality of the parent-infant interaction at

home, as well as benefiting the infant development.

2-

Ross

1984

USA

Cohort Teaching developmental care at home to lower socio

economic parents

HOME

Maternal Attitudes Scale

Maternal developmental

Expectationsand child rearing

attitudes survey

Baby outcomes (not reported

here)

44 40 Intervention group reported significantly higher HOME scores (total score 38.4 vs. 34.9,

p<0.001). No other significant differences reported

2+

Brown 1994 USA Quasi experimentalBooklet, videotape and practical session. for parents of

broncho-pulmonary dysplasia discharged from tertiary

care centre.

Education on physical characteristics of infants on

continuous low-flow oxygen & their care. Psychosocial

development of infant, parental needs, oxygen equipment,

CPR in NICU

Pre-test Post-test study

Pre-test of knowledge

immediately before and post

test immediately after

programme; post-test repe

6 weeks after discharge

18 primary caregivers

of 10 infants

Post-test scores (immediate mean = 17.33 [SD 3.91]; delayed 17.17 [4.41]) significantly

higher than pretest scores (14.38 [3.72], p<0.01)

2+

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Results

Interventions for supporting parents included: 1) individualised developmental and

behavioural care programmes(4,11,12,13,14,15,16,17) (e.g. COPE, NIDCAP, MITP – see below); 2)

behavioural assessment scales; 3) breastfeeding, kangaroo care and infant massage

programmes; 4) support forums for parents; 5) the alleviation of parental stress; 6)

preparing parents for seeing their infant for the first time; 7) communication and

information sharing; 8) discharge planning; and 9) home support programmes.

1) Supporting parents through individualised developmental and behavioural

care programmes

Figure 2: Individualised developmental and behavioural care programmes

1) COPE(4) (Creating Opportunities for Parent Empowerment) provides an educational

programme for parents at the neonatal unit on the appearance and behavioural

characteristics of pre-term infants, how parents can participate in their infant’s care, and

how parents can make more positive interactions with their infant.

2) NIDCAP(11,12,13) (Neonatal Individualised Developmental Care and Assessment

Programme) is an intervention that stimulates pre-term infants and improves the

interaction between mothers and infants

3) MITP (Mother-Infant Transaction Programme) (14,15,16) helps to enable the parents to

appreciate their infant’s unique characteristics, temperament, and developmental potential,

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sensitising parents to their infant’s cues so that they can respond appropriately.

4) NCATS (Nursing Child Assessment Teaching Scale) NCATS (Nursing Child

Assessment Teaching Scale) (17) : Examines the mother-child relationship in conjunction

with teaching mothers how to interact with the baby, teaching behavioural cues, how to

play etc

NB: While the developmental care programmes are designed to improve the development of the baby, these interventions give parents psychological support and practical guidance on how to care for their infants.

Fourteen studies reported individualised developmental and behavioural care

programmes, of which nine were RCTs (see Table 1a). The RCT evidence (1++ & 1+)

suggested that the involvement of parents in an individualised developmental and

behavioural care programme significantly reduced the maternal stress created by the

NICU environment and the demands of their infant (Melnyk 2006, 1++; Kaaresen 2006,

1+; Browne 2005, 1+; Als 2003, 1++; Meyer 1994, 1+; Nurcombe 1984, 1+)(4,11,14,16,18,19). This

intervention also significantly improved the parental understanding of their infant and their

interactions with their infant(4) (Melnyk 2006).

Recent RCT evidence suggested that the introduction of the NIDCAP intervention had not

significantly changed levels of parental stress, confidence or nursing support. However,

the outcomes were measured only 1-2 weeks after the baby was born (Van der Pal 2007,

1+)(12). The introduction of the NCATS programme in the NICU made no significant

difference to parental stress levels and maternal-infant interactions when assessed at

discharge and at three months after discharge (Glazebrook et al. 2007, 1+)(20). One RCT

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found that coaching parents on how to interact with their pre-term infant made no

difference to knowledge of care, sensitivity to the infant or satisfaction in parenting

compared with the control group(Parker-Loewen 1987, 1-)(21). However, this may have

been confounded by the amount of contact that the control mothers had with the

researchers, as these mothers reported that they enjoyed having someone show an

interest in them.

Evidence from a cohort reported that the Vermont Mother-Infant Transaction

Programme (MITP) significantly improved maternal satisfaction, maternal self-confidence,

and mothers’ perception of their infant’s temperament at six months(15). One cohort study

reported that individualised developmental care programmes appeared to make no

difference to parents’ perceptions of the neonatal unit or satisfaction with care, despite

significantly lowering stress cues in the pre-term infants(22).

Evidence from qualitative studies provides an insight into the benefits of

individualised developmental and behavioural care programmes at the neonatal unit, such

as empowering parents to take care of their infants, teaching parents behavioural cues of

their infants, problem-solving, and learning how to interact with their infants, resulting in a

greater satisfaction with the care provided(13,23,24). Furthermore, parents reported a reduction

in stress after such programmes and said that they felt more confident in caring for their

infants, which promoted parental self-reliance when returning home(24).

2) Supporting parents through use of Behavioural Assessment Scales

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No RCT evidence was reported on this intervention. Three cross-sectional studies

provided insights into how to teach parents assess and interpret the behaviour of their pre-

term through using the Brazelton Behavioual Assessment scales. The studies reported this

intervention may improve mother-infant bonding, reduce maternal anxiety, and help

mothers foster a more realistic perception of their pre-term infants(25,26,27).

3) Supporting parents through breast feeding, kangaroo care and infant massage

Four studies reported on parent outcomes of interventions around breast-feeding, of

which one was a RCT, six studies reported on parent outcomes of interventions around

kangaroo care (skin to skin contact with baby out of the incubator), of which 2 were RCTs,

and two studies reported parent outcomes around baby massage, (see Table 1c). An RCT

(1-) reported no significant difference in the mother’s confidence and competence in

carrying out breast feeding by weighing the infant before and after feeds(28).

Three cross-sectional studies and one case series study reported on breast feeding

interventions. The studies reported that parents receiving breastfeeding support at the

neonatal unit were more likely to continue breastfeeding up to a month after discharge

than comparable groups. Breast-feeding education and support at the neonatal unit in the

form of counselling, information (handouts and videos), practical help and group breast-

feeding clinics improved the confidence of mothers in breast-feeding. An individualised

discharge plan for breast feeding mothers with follow-up telephone calls or home visits

appeared to maintain mothers’ confidence in breastfeeding, and provide reassurance(29,30,31)

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Six studies reported parent outcomes of using kangaroo care with their pre-term

infants, of which two were RCTs. The RCT evidence suggests that use of kangaroo care

significantly reduces maternal anxiety around her infant, gives the mother a significantly

greater sense of competence with their infant, and a significantly greater sensitivity

towards her infant(Tessier 1998, 1+)(32). Furthermore, RCT evidence suggests that music

during kangaroo care resulted in significantly lower maternal anxiety (Lai 2006, 1+)(33).

One cohort study, which assessed outcomes of mothers using kangaroo care at 37

weeks, at 3 months, and at 6 months, reported significantly better levels of mother-infant

interaction, more touch, better adaptation to infant cues, and better perception of their

infant at all time periods. Mothers also reported significantly less post-natal depression

compared to the controls at 37 weeks(34).

One cross-sectional study reported that the majority of mothers preferred the

kangaroo method, mainly because their baby was closer to them. Touch was important to

mothers, as it induced feelings of well-being and fulfilment in parents(35).

In the qualitative studies, parents described how kangaroo care helped them to get

to know their infant, increased their confidence, and made them feel that their infant

needed them(36); parents reported that their mood was improved, that they perceived their

infant differently and felt a stronger sense of identifying with their infant(37).

Two studies reported on parent outcomes of baby massage on pre-term infants, of

which one was an RCT (see Table 1d). RCT evidence reported that at three months,

mothers of massaged infants felt significantly less intrusive towards caring for their baby,

interactions were more reciprocal, and treated infants were more socially involved

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compared to controls(38). One cross-sectional study also reported improved maternal-infant

interactions(39).

4) Support forums for parents

No RCT evidence was reported for these interventions. Nine studies reported the

benefits of participating in support groups set up within the NICU, either run by staff at the

neonatal unit or by parents who have experienced having a pre-term infant themselves.

Evidence from cohort studies reported that parent-led peer support groups at the NICU led

to mothers in the intervention group having significantly less stress at four weeks and 16

weeks after support was initiated at the neonatal unit(40,41). Mothers of critically ill pre-term

infants had significantly better maternal mood states, maternal-infant relationships, and

home environments in the intervention group compared to the control group(42)

Evidence from a qualitative study gave insights into how a health professional led

support group assisted parents to gain perspective, feel supported, and learn practical

information about how to interact with their baby(43). Qualitative evidence also reports that

parent-to-parent support groups provided parents with information, emotional support, and

strength(44). Cross-sectional studies and case series studies reported on how health

professional led support groups also helped to relieve anxiety, gave an opportunity to

communicate with staff, and gain confidence in their parenting skills(45,46,47). Another case

series study reported how a support programme run by parents gave parents space to

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express their worries and concerns and provided comfort in talking to ‘experienced’

parents(48).

5) Alleviating parent stress

Seven studies report interventions that attempt to alleviate the adverse psycho-

social consequences of having a pre-term infant, of which four were RCTs. RCT evidence

is reported in the individualised developmental behavioural programme section for the

stress reduction benefits of COPE, NIDCAP, and MITP(4,11,14,16) (Melnyk 2006; Kaaresen

2006; Ali 2003; Nurcombe 1984). Other RCT evidence reports that the use of videotape in

strategies that focus on coping with emotions and active problem solving significantly

reduced maternal stress (Cobiella 1990, 1-)(49).

Evidence from a cohort study reported that the use of one-off psychological

interventions to teach relaxation and coping mechanisms to normalise their experience, as

well as emotional and practical support significantly reduced the traumatic impact for

parents compared to controls(50). Two case series studies gave insights into the use of

journal writing for documenting feelings, thoughts, milestones and involvement in care; the

use of psychotherapy to offer support and insight at a time of crisis was also found to

reduce stress(51,52).

6) Preparing parents for seeing their infant the neonatal unit for the first time

Two studies reported evidence for different ways of preparing parents for seeing

their pre-term infant for the first time, of which one was an RCT(53,54). The RCT evidence

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reported that giving parents a photograph of their pre-term infant provides a positive effect

by improving bonding with their infant (Huckabay 1999, 1+)(53).

The qualitative study gave an insight into how a tour of the neonatal unit prior to

having a pre-term infant (when a pregnancy at high risk of premature labour was

diagnosed) may decrease parent’s fears, inspire hope in their infant’s prognosis, and give

parents reassurance about the care offered at the NICU(54). However, some parents found

the appearance of the babies and the technology overwhelming, and some expressed

concerns that the tour was not supported by staff on the neonatal unit.

7) Interventions for communication and information sharing

Eight studies assessed interventions to improve the issues of communication at the

neonatal unit, of which one was a RCT(55). The RCT evidence reported that taping parent-

doctor consultations improved the recall of parents of the consultation(55). The trial found

that mothers who received audiotapes of their consultation recalled significantly more

information about the diagnosis, treatment, and outcome of their children than women in

the control group at ten days and at four months.

Evidence from a cohort study reported that discussions between health professionals and

parents around their infant’s progress chart resulted in the intervention group having

significantly fewer unrealistic concerns, less uncertainty about the medical condition of the

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infant, less conflict and a greater satisfaction with regards to shared decision-making(56).

Another cohort study reported that parents had significantly greater contact with the NICU

during the infant’s admission and reported a sense of relief at seeing their infant when they

had access to the neonatal unit via a videophone(57).

Qualitative evidence investigated the perception of parents regarding the methods

of effective and ineffective communication at the NICU. Parents perceived that the most

effective communication with nurses was through discourse management (nurses asking

questions and encouraging parents to ask questions), caring and reassuring

communication, and communication as equal partners in the care of the infant. Ineffective

communication was perceived as when the information given was inconsistent, staff did

not check if parents understood the information, and if questions were not allowed(58).

Furthermore, qualitative evidence reported that ‘chat’ or ‘social talk’ between nurses and

parents had a positive influence on mothers’ confidence, their sense of control, and their

feeling of connection with their baby(59).

Cross-sectional studies provided an insight into the methods of improving

communication between parents of pre-term infants and health professionals. The use of a

web-based programme (BabyLink ) to provide individualised information to parents helped

communicate complex issue, and parents reported that it helped to humanise the

experience of the neonatal unit(60). Furthermore, a study reported that the use of BabyLink

improved the overall satisfaction of the family with care at the neonatal unit and actually

reduced the length of stay at the neonatal unit(6). Parents reported that they found the tape-

recorded consultations with doctors helpful to process the information, as well as being

comforting and supportive(61).

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Five studies reported evidence on the information needs of parents, none of which

provided RCT level evidence. One pre-test/post-test study concluded that information and

training for specific practical care of their infant on oxygen therapy could significantly

improve the relevant knowledge of parents, and reduced their distress when entering the

transition period of returning home(62).

Three qualitative studies described an information binder that provided relevant

information about medical and practical issues relating to the NICU. Parents could add

information to the folder. The information binder empowered parents to take an active

interest in acquiring relevant information about their infant and improved parents

understanding and ability to participate in decision-making. Furthermore, the information

binder increased parent’s confidence in caring for their infant, and gave them hope of

progress for their infant(63, 64). Prioritising information through a “card sort” (cards which

state information topics for parents who have had a pre-term infant) was reported by a

qualitative study as being a less intimidating way for parents to access important and

timely information (65). This study reported that parents’ highest priorities were infant

cardiopulmonary resuscitation (CPR), infant illness and development; information with a

moderate priority were feeding, giving medication, and hygiene; and information topics that

were given the lowest priority included getting help at home and the use of car seats. One

cross-sectional study reported that the neonatal nurses were the best source of

information at the NICU(66).

8) Discharge planning

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Six studies reported on discharge programmes, of which one reported RCT level

evidence (Barrera 1986, 1-)(67). RCT evidence suggests that a parent-infant discharge

programme within a therapeutic problem-solving model significantly improved parent

interactions with their infants, and parents were significantly more engaged with their

infants after returning home compared with the parents who did not go through a

discharge programme(67).

One cohort study assessed an early discharge programme with an individualised

care and discharge plan, followed by domiciliary nursing care, and reported significantly

less anxiety in mothers in the intervention group at discharge(68). No significant differences

in the experiences of parents with regards to their infant’s emotional well-being and breast

feeding issues were reported. The levels of anxiety did not appear to be different between

groups of parents who did not receive a formal discharge programme at one year after

discharge from the neonatal unit(68).

The qualitative studies gave insights into how discharge planning provided support

for parents. One study conducted a discharge programme that comprised of an

educational programme during the period of hospitalisation for parents with pre-term

infants, a visit and orientation about the neonatal unit by the family’s health visitor, a

multidisciplinary and cross-sector discharge conference, and the publication of relevant

booklets for parents and health care providers(69). The parents found that most of the

intervention initiatives contributed to a feeling of overall increased support and met their

needs, including improving their confidence in caring for their pre-term infant and ensuring

the well-being of their child following discharge. Families valued the support and guidance

they received from the co-ordinating health visitor, and valued having a named contact

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nurse throughout their stay at the neonatal unit and at home, which demonstrated the

importance of continuity of care. All participants in this study felt secure when they

returned home.

One qualitative study assessed the perceptions of parents of pre-term infants regarding

an early discharge and home-care programme(70). The study concluded that parents of

children who were discharged early may feel more positive about coming home as early as

possible from the hospital, as this may help parents to feel like a ‘normal’ family and not to

have to share their infant with the nurses and other health professionals on the neonatal

unit. However, parents in this study appreciated the 24 hour accessibility of the staff on the

neonatal unit for support and knowledge.

Two further qualitative studies reports a Care by Parent discharge programme and

describes how the mother can stay in the same room or in a room close to her pre-term

infant, assuming all of the aspects of care but with help at hand if needed (71,72). Mothers

reported that it gave them the opportunity to test reality and bridge the gap between

hospital and home, so gaining confidence in taking their infant home, and it helped

mothers to feel like a proper family, and promoted their “ownership” of the infant.

9) Home support programmes

Ten studies reported the outcomes of parents who participated in home intervention

programmes, of which two were RCTs. RCT evidence reported that home support

programmes, where parents are visited and given emotional and practical support

regularly for the first year and for up to three years afterwards, lead to significantly reduced

parental stress levels, a greater positive effect on maternal behaviour and greater

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interactions with their pre-term infant. However, the intervention was not significantly

associated with improved maternal coping (Spiker 1993, 1-)(73). RCT evidence also reports

that regular home support programmes that last for up to a year made mothers

significantly more responsive to their infant and meant that they were able to provide more

appropriate and varied stimulations for the infant (Barrera 1986, 1-)(67).

Evidence from a cohort study where parents were visited regularly and taught care-

taking skills, games and exercises reported a significantly better home environment for the

family. However, there was no difference found between the intervention group and the

control group with regards to maternal coping(74). Evidence from a cohort study also

assessed the support and psychological impact of an Infants Apnea Evaluation

Programme (IAEP) for infants on home monitors and reported that monitoring itself

significantly reduced anxiety. The structured support programme was found to be

supportive by parents(75). A similar cohort study introduced a home counselling programme

for parents who used home monitoring. Parents were significantly less stressed by the

presence of the monitor and by false alarms, and reacted less aggressively to monitor

alarms. Parents in the structured support programme used the monitor less, and mainly

during sleeping periods(76). One cohort conducted an educational developmental

programme at home twice monthly using a parent’s voice tape, baby massage, and a

passive range of motion and exercise. The programme resulted in a significant

improvement in parent-infant interaction at six months and 12 months after discharge, as

well as benefiting the infant(77).

Evidence from a cohort study reported that a home healthcare programme and

home visiting programme significantly improved the home environment of the intervention

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30

groups compared to the control groups at one month and 12 months(5). However, there

were no significant differences between groups with regard to family experiences and

parental satisfaction.

Evidence from one cross-sectional study and two case series studies give insights

into the effect of home support programmes. Specific to the UK, the community neonatal

service (CNS) was valued positively in providing support and continuity of care for parents

who needed a high level of support (e.g. experiencing depression and bonding struggles

with their infant, infant sleeping issues and feeding problems) (78). One study assessed the

impact of an intensive care co-ordinator who provided home visits for providing teaching,

guidance and support to parents(79). The study reported that the intensive care co-ordinator

made families feel comfortable, offering emotional and practical support, and taught

parents the necessary skills for parenting the pre-term infant. Another similar study

assessed a neonatal integrated home care programme where neonatal nurses taught

specific infant care needs and provided emotional support to parents. Parents reported

that the programme helped them to bring their pre-term infants home earlier, provided

nurse help, support, instruction and encouragement (80).

Discussion

The aim of this systematic review focused on identifying interventions that were

effective in supporting, informing and communicating with parents who have had a pre-

term infant. The scope of this review was very broad, and the searches were therefore

developed to be inclusive. This resulted in the search being sensitive, but not specific.

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The majority of studies included in this review are from the USA, which may affect

the generalisation of interventions in neonatal units today and the ability of such studies to

be applied in a British practice setting would need to be considered. While this review

identified a range of interventions that can help parents, certain groups were under-

represented in the study samples, including amongst others minority ethnic groups,

individuals from lower social classes and young parents. Further research on which

interventions are helpful to these groups is needed.

Despite the limitations of the evidence-base, this systematic review highlights

interventions for providing improved support, information and communication to parents of

a pre-term infant. These interventions are summarised in Figure 2.

This study has identified a range of interventions that can produce beneficial

outcomes for parents in relation to communication, information and support. Important

messages have come through this research, which healthcare professionals and neonatal

units should consider. Some units may have already utilised some of these interventions,

but we would urge them to use the POPPY study results to review current practice and

consider whether unit and professional practice requires adaptation or change. Changing

practice can be difficult and a number of key elements are required, including evidence, an

understanding of the context of care and a way of facilitating this evidence into practice(81).

We also acknowledge that part of the context is a complex range of workforce issues that

limits what neonatal units can achieve, despite their best efforts. The focus on developing

patient-centred care within the NHS in the UK also applies to neonatal units and should

include parent-focused care as an extension of this concept(82).

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Many of the interventions that have been identified in this study could be described

as being building blocks for a family-centred model of care in the UK setting, which

embraces the mother and father or significant others in the medical care of their infant.

Such interventions act through establishing key actions and interventions that emphasise

the importance of communicating with, supporting and informing the family. Furthermore,

our review demonstrated that such family-centred interventions resulted in shorter stays at

the neonatal units, less re-hospitalisation of pre-term infants and better long-term outcome

with regards to morbidity in this group of infants(4). This contributes to a strong argument

that highlights the potential for family-centred care to be made more cost-effective, more

acceptable to parents, and in some cases offer important clinical benefits.

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Acknowledgements

The study was funded by the Big Lottery Fund, and the collaborating organisations

included the Royal College of Nursing Institute, the National Childbirth Trust (NCT),

the Warwickshire NCT Pre-term Support Group, and BLISS, the premature baby

charity. The Parents of Premature Babies (POPPY) project was supported by an

advisory group whose membership which consisted of the following people:

Charlotte Bennett, Peter Beresford (Chair), Debbie Bick, Maggie Redshaw, Nicola

Crichton, Phillipa Goodger, Gill Gyte, Merryl Harvey, Yana Richens, Claire Pimm.

The searches for this review were conducted by Paul Miller, Senior Information

Specialist, Royal College of Physicians.

Ethics Approval:

Ethics approval was gained for the study through MREC, South East Ethics

Research Unit (ref: 06/MRE 01/6)

Funder: This study was funded by the Big Lottery

Guarantor: The University of Warwick, Coventry, CV7 4AL is the guarantor of this

study

WHAT IS ALREADY KNOWN ON THIS TOPIC It has long been recognised that family-centred care at the neonatal unit is beneficial not just for the parents of premature infants, but for the infants themselves. While the importance of family centred care is known, neonatal units are unsure which are the most effective family- centred care interventions to support, communicate with, and provide information to these parents

WHAT THIS STUDY ADDS

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The evidence from the systematic review provides a summary pathway of family-centred care interventions to assist in providing support, information and communication with parents of premature infants throughout their stay at the neonatal unit and after discharge home.

Copyright statement:

"the Corresponding Author (Jo Brett) has the right to grant on behalf of all authors and does grant on behalf of all authors, an exclusive licence (or non exclusive for government employees) on a worldwide basis to the BMJ Publishing Group Ltd to permit this article (if accepted) to be published in BMJ Open and any other BMJPGL products and sublicences such use and exploit all subsidiary rights, as set out in our licence.”

Competing interest form:

Please answer the following questions

1. Have you in the past five years accepted the following from an organisation that may in any way gain or lose financially from the publication of this paper: _____No_ Reimbursement for attending a symposium? _____No_ A fee for speaking? ____No__ A fee for organising education? ____No__ Funds for research? ____No__ Funds for a member of staff? ____No__ Fees for consulting?

2. Have you in the past five years been employed by an organisation that may in any way gain or lose financially from the publication of this paper? No

3. Do you hold any stocks or shares in an organisation that may in any way gain or lose financially from the publication of this paper? No

4. Have you acted as an expert witness on the subject of your study, review, editorial, or letter? No

5. Do you have any other competing financial interests? If so, please specify. No

Contributorship statement

JB conducted the systematic review, sat on the advisory group and steering group for the study, synthesized the evidence and wrote the drafts of the paper.

SS was the principal investigator of the study, obtaining funding for the study, sat on the advisory group and steering groups for the study, over saw all stages of the study, assisted in the identification and quality assessment of the evidence, and assisted in the writing of the first draft of the paper.

MN was the fund holder, sat on the advisory group and steering group of the study and commented on the synthesis of the evidence and draft papers.

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NJ was the patient representative on this study. She was integral in the development of this project, in the development of the proposal, sat on the advisory group and the steering group, and commented on the synthesis of the data and the drafts of the paper

LT was integral in the development of this project, in the development of the proposal, sat on the

advisory group and the steering group, and commented on the synthesis of the data and the drafts

of the paper

Funding statement

The work was supported by the Big Lottery, grant number: RG/1/01014958

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Figures and Tables

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209x137mm (96 x 96 DPI)

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Pre-NeonatalIf high risk pregnancy

is diagnosed

Tour of Neonatalunit to prepare Parents (3)

Information of what toexpect - to prepare parents (3)

Figure 2: Summary of POPPY Systematic Review – Pre neonatal

At the Neonatal Unit

SIGN level of evidence used to grade evidence e.g. (3), or (1+) as described in SIGN table

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Summary of POPPY Systematic Review – Interventions at the Neonatal Unit

Family-centred care at the Neonatal Unit

Provide Information

�Parent Information Binder - ‘one day at a time’ (3)• Provide relevant, timely information to parentswhen they require it and store in binder. Also helpful to take with them if transferred to another hospital

� Prioritising info needs in parent circle (3)• Using card sort to assess most important information needs, support needs and communication preferences ofparents.

� Provide information leaflets on specific conditions relevant to individual parents (3)

�Information Needs (R)• Sensitivity to behavioural cues• Infant development and behaviour• Caring for the baby

Support Groups

�Parent lead (buddy parent programme)(2++)�Nurse lead (3)

�Kangaroo care (1+)�Baby massage (1)�Breast feeding (3)

(ie to improve confidence and competence in caring and bonding with baby)

Stress Education Programme�COPE (Creating opportunities for Parent empowerment) (1+)�NIDCAP (Neonatal individualised Developmental Care

and Assessment Programme) (1+)�Mother – Infant Transaction Programme (1+)�Video tape training: active problem solving focussed coping

strategy (1+)�One off stress reduction programme (2+)�Journal Writing (3)�Counselling / Psychotherapy (3)

Improve Communication

� Record consultations with doctors (or provide results in writing) (1++)

� Involve Parents in discussions aroundInfant Progress Chart (2++)

� Video-phone link to unit (2-)� Baby Link – website information –

general and specific to parents (3)

Discharge Planning

Teaching Parents:

Educate parents about behavioural cues and developmental aspects of baby to improve interaction with baby and knowledge of baby (COPE,

NIDCAP and MITP) (1+)

�Behavioural Assessment Scales•Brazelton Behavioural Assessment Scale (3)

Education videos and books to teach parents about behavioural cues and development shifts of their premature baby (1+)

� Individualised developmentally supportive family centred care interventions, including emotional and practical factors (1+)

Individualised developmental and care Programmes�COPE (Creating opportunities for Parent empowerment)(1+)�NIDCAP (Neonatal individualised Developmental Care

and Assessment Programme) (1+)�Mother – Infant Transaction Programme (1+)

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Discharge

Summary of POPPY Systematic Review - Interventions at Discharge

Home Care

Discharge Planning Programme(Reduce stress of returning home, improve parent-babyinteractions, improve home environment for baby)

1. Parent – Infant interventions (to improve parent – infant interactions and improve the home environment) (1+)

2. Early discharge with domiciliary nursing (2+)

3. Educational programme for Parents; visit and orientation from a Health Visitor linked to the unit; multidisciplinary and cross-sector discharge conference; provision of appropriate booklets / leaflets for Parents. (3)

4. Care by Parent discharge programme –mothers / parents stay overnight with their infant in the same room and assumes all care for the baby, but help is available if needed. (3)

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Home Care

Summary of POPPY Systematic Review –

Interventions for Home Care Programmes

Home-monitoring Programme (2+)

Structured home-visiting programme

(E.g. teaching caretaking skills, games and exercises to do with baby, coping skills for parents)

Examples:

Spiker / Klebanov – 3 Visits per month in year 1; 1.5 visits per month in years 2 and 3 (1+)

Barrera: 1-2 visits a week for 4 months; then every other week for 5-8 months and monthly for last 3 months of the year (1+)

Ross: 2 visits a month for first 3 months, then 1 visit a month up to 12 months (2+)

Isaacs: 2 visits a month for first 3 months, then 1 visit a month up to 12 months (3)

Community Neonatal Service

Community neonatal nurses assist parents in practical and emotional issues at home as required. Telephone Service available to parents to call when needed. Aimed at high risk parents (3)

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SIGN Level of evidence

• 1++ = High-quality meta-analyses, systematic reviews of RCTs, or RCTs with a very low risk of bias

• 1+ = Well-conducted meta-analyses, systematic reviews of RCTs, or RCTs with a low risk of bias

• 1–Meta-analyses, systematic reviews of RCTs, or RCTs with a high risk of bias*

• 2++ = High-quality systematic reviews of case–control or cohort studies High-quality case–control or cohort studies with a very low risk of confounding, bias, or chance and a high probability that the relationship is causal

• 2+ = Well-conducted case–control or cohort studies with a low risk of confounding, bias, or chance and a moderate probability that the relationship is causal

• 2– = Case–control or cohort studies with a high risk of confounding bias, or chance and a significant risk that the relationship is not causal*

• 3 = Non-analytic studies (for example, case reports, case series)

• 4 = Expert opinion, formal consensus

• R= non-systematic review

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A systematic review of interventions for communicating with, supporting and providing information to parents of

pre-term infants

Journal: BMJ Open

Manuscript ID: BMJ Open-2010-000023.R1



07-Feb-2011

Complete List of Authors: Brett, Jo; Warwick University

Staniszewska, Sophie Newburn, Mary; Warwick University Jones, Nicola; Warwickshire NCT Pre-term Support Group Taylor, Lesley; National Childbirth Trust




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A systematic review of interventions for communicating

with, supporting and providing information to parents of

pre-term infants


* Jo Brett

Royal College of Nursing Research Institute,



Tel: 024761 50622

[email protected]

POPPY website: http://www.poppy-project.org.uk/

Sophie Staniszewska

[email protected] – as above

**Mary Newburn

National Childbirth Trust


W3 6NH

Tel: 0844 243 6000

[email protected]

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2

Lesley Taylor

[email protected] – as above

Nicola Jones

Parent Representative


No fixed address

[email protected]

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Abstract



support and engage parents in the care of their infant may improve outcomes for

both the parents and the infant. The objective of this systematic review is to identify

and map out effective interventions for communication with, supporting and

providing information for parents of pre-term infants.



HELMIS. Hand-searching of reference lists and journals was conducted. Studies

were included if they provided parent-reported outcomes of interventions relating to

information, communication, and/or support for parents of pre-term infants prior to

the birth, during care at the NICU, and after going home with their pre-term infant.

Titles and abstracts were read for relevance and papers judged to meet inclusion

criteria were included. Papers were data extracted, quality assessed and a narrative

summary was conducted in line with the York Centre for Reviews and Dissemination

guidelines.

Studies reviewed: 72 papers identified, 19 papers were randomised

controlled trials, 16 were cohort or quasi-experimental studies, 37 were non-

intervention studies.

Results: Interventions for supporting, communicating with, and providing

information to parents that have had a premature infant are reported. Parents report

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feeling supported through individualised developmental and behavioural care

programmes, through being taught behavioural assessment scales, and through

breast feeding, kangaroo care and baby massage programmes. Parents also felt

supported through organised support groups and through provision of an

environment where parents can meet and support each other. Parental stress may

be reduced through individual developmental care programmes, through

psychotherapy, through interventions that teach emotional coping skills and active

problem solving, and journal writing.

Evidence reports the importance of preparing parents for the neonatal unit through

the neonatal tour, and the importance of good communication throughout the infant

admission phase and after discharge home. Providing individual web-based

information about the infant, recording doctor-patient consultations, and provision of

an information binder may also improve communication with parents.

The importance of thorough discharge planning throughout the infant’s admission

phase and the importance of home support programmes are also reported.

Conclusion: The paper reports evidence of interventions that help support,

communicate with and inform parents who have had a premature infant throughout

the admission phase of the infant, discharge, and returning home. The level of

evidence reported is mixed, and this should be taken into account when developing

policy. A summary of interventions from the available evidence is reported.

Article focus:

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A systematic mapping review to identify and synthesize evidence of effective

interventions for communicating with, supporting and providing information for

parents of pre-term infants.

Key messages:

• The review highlights the importance of encouraging and involving parents in

the care of their pre-term infant at the neonatal unit to enhance their ability to cope

with and improve their confidence in caring for the infant, which may also lead to

improved infant outcomes and reduced length of stay at the neonatal unit.

• Interventions for supporting parents included: 1) involving parents in

individualised developmental and behavioural care programmes (e.g. COPE,

NIDCAP, MITP) and behavioural assessment programmes; 2) breastfeeding,

kangaroo care and infant massage programmes; 3) support forums for parents; 4)

interventions to alleviate parental stress; 5) preparation of parents for various

stages, for example seeing their infant for the first time, preparing to go home; 6)

home support programmes.


professionals is important, with various modes of providing this information reported,

for example ward rounds with doctors, discussion around infant notes, websites,

and hard copy information.


Strengths

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This is the first review to synthesize the evidence of interventions to support parents

of pre-term infants through improved provision of information, improved

communications between parents and health professionals and alleviation of stress

at all stages of a parents journey through the neonatal unit. It highlights relatively

inexpensive interventions that can be integrated into their pathway through the

neonatal unit and going home, enhancing parental coping, and potentially improving

infant outcomes and reducing the infants length of stay at the neonatal unit.

Limitations

The quality of the evidence that this review reports is variable, and includes all types

of study designs.

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Introduction

While medical advances mean that very premature neonates have an

increasingly better chance of survival, the impact of this experience on the

child and their parents cannot be underestimated. The birth of a pre-term

infant can be an intensely stressful, confusing and difficult time for parents

and families(1). Parents can have feelings of fear about their infant's condition

or doubt in their ability to care for the child. Parents may also experience

anger or grief, or they may blame themselves and experience intense guilt.

Once mothers have returned home, hospital visits to see their baby can be

difficult if coping with other siblings and travelling long distances to the

neonatal unit(2). It is therefore not surprising that mothers of pre-term babies

experience significantly higher levels of post-natal depression than mothers of

healthy full-term infants(3). Fathers, who are often the main source of comfort

and support for their wives, report feeling powerless to help, and often feel

isolated from their infant as the health professionals focus on the infant and

mother(4).

Furthermore, while going home with their infant can be a time of joy and relief

for these parents, bringing home a fragile infant and caring for them on your

own for the first time can be a worrying time, causing additional stress for the

parents.

Reducing parent stress and introducing interventions to improve parents

confidence and ability to care for their premature infant at the neonatal unit and after

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returning home can improve outcomes for parents and their child, reduce the length

of stay at the neonatal unit(5,6) and reduce the re-admittance to hospital(7).


understanding of the experiences of a range of parents with pre-term babies,

particularly with regards to the communication, information and support they

received on the NICU, ensuring that the perspectives of parents are at the heart of

the study(8). This paper reports the results of the first phase of the POPPY study,

which takes the form of a systematic review to identify effective interventions for

communicating with, supporting and providing information for parents of pre-term

babies.

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Methods

Systematic searches were undertaken for the period of January 1980 to

October 2006 in the following databases: Medline, Embase, PsychINFO, the

Cochrane library, CINHAL, MIDIRS, HMIC, and HELMIS (see table 1 for search

strategy). A combination of text terms and MeSH terms were used to maximise the

volume of literature retrieved. Grey literature was sought from specialists in the field,

and the following journals were hand-searched from 1990 onwards for all relevant

English language articles: Neonatal Network Journal, Journal of Neonatal Nursing

and Journal of Obstetric, Gynecologic, and Neonatal Nursing. Update searches


Studies were included if they met the inclusion criteria:

• Outcomes reported by parents who have had a premature infant (i.e.

<36 weeks gestation).

• Provided parent-reported outcomes of interventions relating to

information provision at the neonatal unit and after discharge.


communication with health professionals at the neonatal unit and after

discharge.


provision of support at the neonatal unit and after discharge.

• Design of study was: RCTs, Quasi experimental, cohort, case-control,

cross-sectional, case series, case reports, or qualitative

• Studies were relevant to that of developed countries

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• Passed quality assessment

• Published between January 1980 to October 2009

• English language

Studies were excluded in the met the exclusion criteria

• Reported parent-reported outcomes of parents who had a sick full-term infant

at the neonatal unit.

• Outcomes were not reported by parents (e.g. evaluation of parent

intervention by health professionals)

• Editorials or opinions

• Study was fatally flawed

• Not English Language

• Published before Jan 1980

It was felt that the systematic review should be inclusive of all study designs

as it is often not feasible or appropriate to conduct randomised control trials

(RCTs) or other intervention studies on the outcomes for parents that were

measured. We therefore set out to conduct a more realist review. A realist

review is not a method or formula, but a logic of enquiry that is inherently

pluralist and flexible, encompassing all types of study types. It seeks not to

judge but to explain, and is driven by the question ‘What works for whom in

what circumstances and in what respects?’ We wanted to identify what works

for parents who have had a premature infant and at what part of their

experience at the neonatal unit and after returning home. In practical terms,

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the realist reviewer identifies and evaluates the programme theories that

implicitly or explicitly underlie families of interventions.

It was deemed therefore that, despite the potential bias inherent in

descriptive studies, the results of these studies nonetheless gave an important

insight into parent-related interventions and should be included in this review.

The data extraction form and quality assessment for inclusion criteria were based on

the guideline from the NHS Centre for Reviews and Dissemination (NHS CRD) (9)

Initially, two reviewers extracted data (JB, SS) independently for 20% of papers and

disagreements were resolved by discussion with a third reviewer. There was a high

level of agreement between reviewers, so the remaining data was extracted by one

reviewer and checked by a second. Any disagreements were resolved by discussion

with a third reviewer. The quantitative studies covered a wide range of interventions

and different methods of assessment so it was not possible to carry out a meta-

analysis. A non-quantitative synthesis was conducted based on the extracted data.

In the summary figure (Figure 2), the included evidence was assessed using the

Scottish Intercollegiate Guidelines Assessment (SIGN) (10).

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Search Results


Seventy two papers were included (four were deemed relevant in two of the

sections). Papers were excluded for a number of reasons including the fact that no

parent outcome was identified, the study was irrelevant to neonatal services offered

in developed countries such as the UK (3), or the study was deemed to be fatally

flawed (11)

Tables 2a and 2b report the data from the randomised control trials, quasi

experimental studies and cohort studies. Non-intervention studies are reported in

table 2c.

Results

Interventions for supporting parents included: 1) individualised developmental

and behavioural care programmes(4,11,12,13,14,15,16,17) (e.g. COPE, NIDCAP, MITP – see

below); 2) behavioural assessment scales; 3) breastfeeding, kangaroo care and

infant massage programmes; 4) support forums for parents; 5) the alleviation of

parental stress; 6) preparing parents for seeing their infant for the first time; 7)

communication and information sharing; 8) discharge planning; and 9) home

support programmes.

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care programmes



programmes, of which nine were RCTs (see Table 1a). The RCT evidence (1++ &

1+) suggested that the involvement of parents in an individualised developmental

and behavioural care programme significantly reduced the maternal stress created

by the NICU environment and the demands of their infant (4,11,14,16,18,19). This

intervention also significantly improved the parental understanding of their infant and

their interactions with their infant(4).

Recent RCT evidence suggested that the introduction of the NIDCAP intervention

had not significantly changed levels of parental stress, confidence or nursing

support. However, the outcomes were measured only 1-2 weeks after the baby was

born (Van der Pal 2007, 1+)(12). The introduction of the NCATS programme in the

NICU made no significant difference to parental stress levels and maternal-infant

interactions when assessed at discharge and at three months after discharge

(Glazebrook et al. 2007, 1+)(20). One RCT found that coaching parents on how to

interact with their pre-term infant made no difference to knowledge of care,

sensitivity to the infant or satisfaction in parenting compared with the control

group(Parker-Loewen 1987, 1-)(21). However, this may have been confounded by the

amount of contact that the control mothers had with the researchers, as these

mothers reported that they enjoyed having someone show an interest in them.

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Programme (MITP) significantly improved maternal satisfaction, maternal self-

confidence, and mothers’ perception of their infant’s temperament at six months(15).

One cohort study reported that individualised developmental care programmes

appeared to make no difference to parents’ perceptions of the neonatal unit or

satisfaction with care, despite significantly lowering stress cues in the pre-term

infants(22).


individualised developmental and behavioural care programmes at the neonatal

unit, such as empowering parents to take care of their infants, teaching parents

behavioural cues of their infants, problem-solving, and learning how to interact with

their infants, resulting in a greater satisfaction with the care provided(13,23,24).

Furthermore, parents reported a reduction in stress after such programmes and said

that they felt more confident in caring for their infants, which promoted parental self-

reliance when returning home(24).


No RCT evidence was reported on this intervention. Three cross-sectional

studies provided insights into how to teach parents assess and interpret the

behaviour of their pre-term through using the Brazelton Behavioual Assessment

scales. The studies reported this intervention may improve mother-infant bonding,

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reduce maternal anxiety, and help mothers foster a more realistic perception of their

pre-term infants(25,26,27).

3) Supporting parents through breast feeding, kangaroo care and infant

massage

Four studies reported on parent outcomes of interventions around breast-

feeding, of which one was a RCT, six studies reported on parent outcomes of

interventions around kangaroo care (skin to skin contact with baby out of the

incubator), of which 2 were RCTs, and two studies reported parent outcomes

around baby massage, (see Table 1c). An RCT (1-) reported no significant

difference in the mother’s confidence and competence in carrying out breast feeding

by weighing the infant before and after feeds(28).

Three cross-sectional studies and one case series study reported on breast

feeding interventions. The studies reported that parents receiving breastfeeding

support at the neonatal unit were more likely to continue breastfeeding up to a

month after discharge than comparable groups. Breast-feeding education and

support at the neonatal unit in the form of counselling, information (handouts and

videos), practical help and group breast-feeding clinics improved the confidence of

mothers in breast-feeding. An individualised discharge plan for breast feeding

mothers with follow-up telephone calls or home visits appeared to maintain mothers’

confidence in breastfeeding, and provide reassurance(29,30,31)

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Six studies reported parent outcomes of using kangaroo care with their pre-

term infants, of which two were RCTs. The RCT evidence (1+) suggests that use of

kangaroo care significantly reduces maternal anxiety around her infant, gives the

mother a significantly greater sense of competence with their infant, and a

significantly greater sensitivity towards her infant32). Furthermore, RCT evidence (1+)

suggests that music during kangaroo care resulted in significantly lower maternal

anxiety (33).

One cohort study, which assessed outcomes of mothers using kangaroo care

at 37 weeks, at 3 months, and at 6 months, reported significantly better levels of

mother-infant interaction, more touch, better adaptation to infant cues, and better

perception of their infant at all time periods. Mothers also reported significantly less

post-natal depression compared to the controls at 37 weeks(34).


kangaroo method, mainly because their baby was closer to them. Touch was

important to mothers, as it induced feelings of well-being and fulfilment in parents(35).

In the qualitative studies, parents described how kangaroo care helped them

to get to know their infant, increased their confidence, and made them feel that their

infant needed them(36); parents reported that their mood was improved, that they

perceived their infant differently and felt a stronger sense of identifying with their

infant(37).

Two studies reported on parent outcomes of baby massage on pre-term

infants, of which one was an RCT (see Table 1d). RCT evidence (1+) reported that

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at three months, mothers of massaged infants felt significantly less intrusive towards

caring for their baby, interactions were more reciprocal, and treated infants were

more socially involved compared to controls(38). One cross-sectional study also

reported improved maternal-infant interactions(39).


No RCT evidence was reported for these interventions. Nine studies reported

the benefits of participating in support groups set up within the NICU, either run by

staff at the neonatal unit or by parents who have experienced having a pre-term

infant themselves. Evidence from cohort studies reported that parent-led peer

support groups at the NICU led to mothers in the intervention group having

significantly less stress at four weeks and 16 weeks after support was initiated at the

neonatal unit(40,41). Mothers of critically ill pre-term infants had significantly better

maternal mood states, maternal-infant relationships, and home environments in the

intervention group compared to the control group(42)

Evidence from a qualitative study gave insights into how a health professional

led support group assisted parents to gain perspective, feel supported, and learn

practical information about how to interact with their baby(43). Qualitative evidence

also reports that parent-to-parent support groups provided parents with information,

emotional support, and strength(44). Cross-sectional studies and case series studies

reported on how health professional led support groups also helped to relieve

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anxiety, gave an opportunity to communicate with staff, and gain confidence in their

parenting skills(45,46,47). Another case series study reported how a support programme

run by parents gave parents space to express their worries and concerns and

provided comfort in talking to ‘experienced’ parents(48).


Seven studies report interventions that attempt to alleviate the adverse

psycho-social consequences of having a pre-term infant, of which four were RCTs.

RCT evidence (1+ - 1++) is reported in the individualised developmental behavioural

programme section for the stress reduction benefits of COPE, NIDCAP, and

MITP(4,11,14,16). Other RCT evidence (1-) reports that the use of videotape in

strategies that focus on coping with emotions and active problem solving

significantly reduced maternal stress (49).


interventions to teach relaxation and coping mechanisms to normalise their

experience, as well as emotional and practical support significantly reduced the

traumatic impact for parents compared to controls(50). Two case series studies gave

insights into the use of journal writing for documenting feelings, thoughts, milestones

and involvement in care; the use of psychotherapy to offer support and insight at a

time of crisis was also found to reduce stress(51,52).


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Two studies reported evidence for different ways of preparing parents for

seeing their pre-term infant for the first time, of which one was an RCT(53,54). The RCT

evidence (1+) reported that giving parents a photograph of their pre-term infant

provides a positive effect by improving bonding with their infant(53).

The qualitative study gave an insight into how a tour of the neonatal unit prior

to having a pre-term infant (when a pregnancy at high risk of premature labour was

diagnosed) may decrease parent’s fears, inspire hope in their infant’s prognosis,

and give parents reassurance about the care offered at the NICU(54). However, some

parents found the appearance of the babies and the technology overwhelming, and

some expressed concerns that the tour was not supported by staff on the neonatal

unit.


Eight studies assessed interventions to improve the issues of communication

at the neonatal unit, of which one was a RCT(55). The RCT evidence (1+) reported

that taping parent-doctor consultations improved the recall of parents of the

consultation(55). The trial found that mothers who received audiotapes of their

consultation recalled significantly more information about the diagnosis, treatment,

and outcome of their children than women in the control group at ten days and at

four months.

Evidence from a cohort study reported that discussions between health

professionals and parents around their infant’s progress chart resulted in the

intervention group having significantly fewer unrealistic concerns, less uncertainty

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about the medical condition of the infant, less conflict and a greater satisfaction with

regards to shared decision-making(56). Another cohort study reported that parents

had significantly greater contact with the NICU during the infant’s admission and

reported a sense of relief at seeing their infant when they had access to the

neonatal unit via a videophone(57).

Qualitative evidence investigated the perception of parents regarding the

methods of effective and ineffective communication at the NICU. Parents perceived

that the most effective communication with nurses was through discourse

management (nurses asking questions and encouraging parents to ask questions),

caring and reassuring communication, and communication as equal partners in the

care of the infant. Ineffective communication was perceived as when the

information given was inconsistent, staff did not check if parents understood the

information, and if questions were not allowed(58). Furthermore, qualitative evidence

reported that ‘chat’ or ‘social talk’ between nurses and parents had a positive

influence on mothers’ confidence, their sense of control, and their feeling of

connection with their baby(59).


communication between parents of pre-term infants and health professionals. The

use of a web-based programme (BabyLink ) to provide individualised information to

parents helped communicate complex issue, and parents reported that it helped to

humanise the experience of the neonatal unit(60). Furthermore, a study reported that

the use of BabyLink improved the overall satisfaction of the family with care at the

neonatal unit and actually reduced the length of stay at the neonatal unit(6). Parents

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reported that they found the tape-recorded consultations with doctors helpful to

process the information, as well as being comforting and supportive(61).

Five studies reported evidence on the information needs of parents, none of

which provided RCT level evidence. One pre-test/post-test study concluded that

information and training for specific practical care of their infant on oxygen therapy

could significantly improve the relevant knowledge of parents, and reduced their

distress when entering the transition period of returning home(62).

Three qualitative studies described an information binder that provided

relevant information about medical and practical issues relating to the NICU.

Parents could add information to the folder. The information binder empowered

parents to take an active interest in acquiring relevant information about their infant

and improved parents understanding and ability to participate in decision-making.

Furthermore, the information binder increased parent’s confidence in caring for their

infant, and gave them hope of progress for their infant(63, 64). Prioritising information

through a “card sort” (cards which state information topics for parents who have had

a pre-term infant) was reported by a qualitative study as being a less intimidating

way for parents to access important and timely information (65). This study reported

that parents’ highest priorities were infant cardiopulmonary resuscitation (CPR),

infant illness and development; information with a moderate priority were feeding,

giving medication, and hygiene; and information topics that were given the lowest

priority included getting help at home and the use of car seats. One cross-sectional

study reported that the neonatal nurses were the best source of information at the

NICU(66).

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Six studies reported on discharge programmes, of which one reported RCT

level evidence(67). RCT evidence (1-) suggests that a parent-infant discharge


interactions with their infants, and parents were significantly more engaged with

their infants after returning home compared with the parents who did not go through

a discharge programme(67).

One cohort study assessed an early discharge programme with an

individualised care and discharge plan, followed by domiciliary nursing care, and

reported significantly less anxiety in mothers in the intervention group at

discharge(68). No significant differences in the experiences of parents with regards to

their infant’s emotional well-being and breast feeding issues were reported. The

levels of anxiety did not appear to be different between groups of parents who did

not receive a formal discharge programme at one year after discharge from the

neonatal unit(68).

The qualitative studies gave insights into how discharge planning provided

support for parents. One study conducted a discharge programme that comprised of

an educational programme during the period of hospitalisation for parents with pre-

term infants, a visit and orientation about the neonatal unit by the family’s health

visitor, a multidisciplinary and cross-sector discharge conference, and the

publication of relevant booklets for parents and health care providers(69). The

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parents found that most of the intervention initiatives contributed to a feeling of

overall increased support and met their needs, including improving their confidence

in caring for their pre-term infant and ensuring the well-being of their child following

discharge. Families valued the support and guidance they received from the co-

ordinating health visitor, and valued having a named contact nurse throughout their

stay at the neonatal unit and at home, which demonstrated the importance of

continuity of care. All participants in this study felt secure when they returned home.

One qualitative study assessed the perceptions of parents of pre-term infants

regarding an early discharge and home-care programme(70). The study concluded

that parents of children who were discharged early may feel more positive about

coming home as early as possible from the hospital, as this may help parents to feel

like a ‘normal’ family and not to have to share their infant with the nurses and other

health professionals on the neonatal unit. However, parents in this study

appreciated the 24 hour accessibility of the staff on the neonatal unit for support and

knowledge.

Two further qualitative studies reports a Care by Parent discharge

programme and describes how the mother can stay in the same room or in a room

close to her pre-term infant, assuming all of the aspects of care but with help at

hand if needed (71,72). Mothers reported that it gave them the opportunity to test

reality and bridge the gap between hospital and home, so gaining confidence in

taking their infant home, and it helped mothers to feel like a proper family, and

promoted their “ownership” of the infant.

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Ten studies reported the outcomes of parents who participated in home

intervention programmes, of which two were RCTs. RCT evidence (1-) reported that

home support programmes, where parents are visited and given emotional and

practical support regularly for the first year and for up to three years afterwards, lead

to significantly reduced parental stress levels, a greater positive effect on maternal

behaviour and greater interactions with their pre-term infant. However, the

intervention was not significantly associated with improved maternal coping(73). RCT

evidence also reports that regular home support programmes that last for up to a

year made mothers significantly more responsive to their infant and meant that they

were able to provide more appropriate and varied stimulations for the infant(67).

Evidence from a cohort study where parents were visited regularly and taught

care-taking skills, games and exercises reported a significantly better home

environment for the family. However, there was no difference found between the

intervention group and the control group with regards to maternal coping(74).

Evidence from a cohort study also assessed the support and psychological impact

of an Infants Apnea Evaluation Programme (IAEP) for infants on home monitors and

reported that monitoring itself significantly reduced anxiety. The structured support

programme was found to be supportive by parents(75). A similar cohort study

introduced a home counselling programme for parents who used home monitoring.

Parents were significantly less stressed by the presence of the monitor and by false

alarms, and reacted less aggressively to monitor alarms. Parents in the structured

support programme used the monitor less, and mainly during sleeping periods(76).

One cohort conducted an educational developmental programme at home twice

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monthly using a parent’s voice tape, baby massage, and a passive range of motion

and exercise. The programme resulted in a significant improvement in parent-infant

interaction at six months and 12 months after discharge, as well as benefiting the

infant(77).

Evidence from a cohort study reported that a home healthcare programme

and home visiting programme significantly improved the home environment of the

intervention groups compared to the control groups at one month and 12 months(5).

However, there were no significant differences between groups with regard to family

experiences and parental satisfaction.

Evidence from one cross-sectional study and two case series studies give

insights into the effect of home support programmes. Specific to the UK, the

community neonatal service (CNS) was valued positively in providing support and

continuity of care for parents who needed a high level of support (e.g. experiencing

depression and bonding struggles with their infant, infant sleeping issues and

feeding problems) (78). One study assessed the impact of an intensive care co-

ordinator who provided home visits for providing teaching, guidance and support to

parents(79). The study reported that the intensive care co-ordinator made families

feel comfortable, offering emotional and practical support, and taught parents the

necessary skills for parenting the pre-term infant. Another similar study assessed a

neonatal integrated home care programme where neonatal nurses taught specific

infant care needs and provided emotional support to parents. Parents reported that

the programme helped them to bring their pre-term infants home earlier, provided


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Discussion

The aim of this systematic review focused on identifying interventions that

were effective in supporting, informing and communicating with parents who have

had a pre-term infant. This study has identified a range of interventions that can

produce beneficial outcomes for parents in relation to communication, information

and support.

RCT evidence reports that developmental and behavioural care

programmes such as COPE and MITP significantly reduce stress and

depression in mothers of premature infants, significantly increase mothers’

knowledge of her infant’s condition and care (COPE) and significantly

improved mothers attitude and confidence in caring for their infant (MITP).

COPE and MITP performed better than other such programmes because they

were developed to improve both mother and infant outcomes, whereas other

developmental programmes focussed more on infant outcomes. Such

interactive learning programmes appear to be more successful at reducing

mother’s stress and improving mother’s knowledge than stand alone coaching

sessions for parents.

Other RCT evidence reported that skin to skin care and baby massage

significantly improved the mother-infant interaction and increased the

mother’s sense of competence in handling their infant. These are inexpensive

interventions that can be introduced relatively easily to most NICUs.

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Perhaps more controversial RCT evidence reports that recording parent’s

consultations with their doctors significantly improved the parent’s recall of

diagnosis, treatment and outcomes of their infant. However, in our growing

litigious society, doctors may be reluctant to do this.

Cohort evidence reports the benefits of several interventions including

discussions around the infant progress chart, parent support groups at the

neonatal unit and home support programmes once the infant has been

discharged. The non-intervention studies further added to the review by bring

a wider breadth of information around the beneficial experiences of

developmental care programmes, educational interventions, preparation for

visiting the neonatal unit, and interventions to reduce parent’s stress, that

might not have been reported within an RCT design.

Important messages have come through this research, which healthcare

professionals and neonatal units should consider. Some neonatal units may have

already utilised some of these interventions, but we would urge them to use the

results of this systematic review to re-evaluate current practice around parents of

premature infants and consider whether unit and professional practice requires

adaptation or change. Changing practice can be difficult and a number of key

elements are required, including evidence, an understanding of the context of care

and a way of facilitating this evidence into practice(81). We also acknowledge that

part of the context is a complex range of workforce issues that limits what neonatal

units can achieve, despite their best efforts. The focus on developing patient-

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centred care within the NHS in the UK also applies to neonatal units and should


Many of the interventions that have been identified in this study could be

described as being building blocks for a family-centred model of care in the UK

setting, which embraces the mother and father or significant others in the medical

care of their infant. Such interventions act through establishing key actions and

interventions that emphasise the importance of communicating with, supporting and

informing the family. Furthermore, our review demonstrated that such family-centred

interventions resulted in shorter stays at the neonatal units, less re-hospitalisation of

pre-term infants and better long-term outcome with regards to morbidity in this group

of infants(4). This contributes to a strong argument that highlights the potential for

family-centred care to be made more cost-effective, more acceptable to parents,

and in some cases offer important clinical benefits.

The scope of this review was very broad, and the searches were

therefore developed to be inclusive. This resulted in the search being

sensitive, but not specific. Furthermore, this systematic review includes

intervention studies and non-intervention studies. It is implicit that the non-

interventional studies will bring bias to the evidence base. We have therefore

stratified the summary of results into RCTs and non RCTs, with the non-RCTs

being stratified further within observational designs by study design (ie.,

cohort, case-control, cross-sectional, etc). It was important to include the non-

interventional studies as much of the literature around parents’ views and

experiences does not lend itself to the RCT design. Being inclusive of studies

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benefits the evidence base by bringing together ‘experience’ studies in a

systematic way gaining a greater breadth of perspectives and a deeper

understanding of issues from the point of view of those targeted by the

interventions.

The Scottish intercollegiate group network (SIGN) grading system used in

this review is intended to place greater weight on the quality of evidence, and to

emphasise that the body of evidence should be considered as a whole, and not rely

on a single study. It is also intended to allow more weight to be given to

recommendations supported by the good quality observational studies where RCTs

are not available for practical or ethical reasons, as shown in figure 4.

The majority of studies included in this review are from the USA, which may

affect the generalisation of interventions in neonatal units today and the ability of

such studies to be applied in a UK practice setting would need to be considered.

While this review identified a range of interventions that can help parents, certain

groups were under-represented in the study samples, including amongst others

minority ethnic groups, individuals from lower social classes and young parents.

Further good quality research within a UK setting, and research on under-

represented groups of parents at the neonatal units is needed.


interventions for providing improved support, information and communication to

parents of a pre-term infant. These interventions are summarised in Figure 3.

Figure 4 Scottish Intercollegiate Guideline Network (SIGN) Levels of Evidence

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Table 1:

Search terms:

INTERVENTION MEDLINE

1951-2006

Search carried out 23 JAN

2006

1. SEARCH: INFORMATION-

DISSEMINATION#.DE.

2. SEARCH: INFORMATION OR INFORM$ OR

INFORMATION ADJ SEEKING ADJ

BEHAVIOUR OR INFORMATION

ADJ NEEDS OR PATIENT ADJ

INFORMATION OR (PARENT ADJ

INFORMATION).AB.

3. SEARCH: ACCESS-TO-INFORMATION#.DE.

4. SEARCH: (INFORMATION ADJ

RESOURCES).AB.

5. SEARCH: PATIENT-EDUCATION#.DE. OR

PATIENT-EDUCATION-HANDOUT-

PUBLICATION-TYPE#.DE.

6. SEARCH: PATIENT-CARE-TEAM#.DE.

7. SEARCH: COLLABORATI$ OR JOINT ADJ

WORKING OR TEAM.AB.

8. SEARCH: COMMUNICATION#.W..DE. OR

COMMUNICATION-BARRIERS#.DE.

9. SEARCH: COMMUNICATION.AB.

10. SEARCH: (INFORMATION ADJ SERVICE).AB.

11. SEARCH: EARLY-INTERVENTION-

EDUCATION#.DE.

12. SEARCH: SELF-HELP-GROUPS#.DE.

13. SEARCH: SOCIAL-SUPPORT#.DE.

14. SEARCH: HELPING-BEHAVIOR#.DE.

15. SEARCH: HELP ADJ SEEKING ADJ

BEHAVIOUR OR HELP.AB.

16. SEARCH: SELF ADJ HELP OR (SELF ADJ

HELP ADJ GROUPS).AB.

17. SEARCH: ADVICE OR ADVISE OR

ADVISORY.AB.

18. SEARCH: INTERNET#.W..DE.

19. SEARCH: COUNSELING#.W..DE. OR

DIRECTIVE-COUNSELING#.DE.

20. SEARCH: COGNITIVE-THERAPY#.DE. OR

THERAPY-COMPUTER-

ASSISTED#.DE. OR

NONDIRECTIVE-THERAPY#.DE.

21. SEARCH: PSYCHOTHERAPY#.W..DE. OR

PSYCHOTHERAPY-BRIEF#.DE.

22. SEARCH: INTERNET OR WEB OR

COUNSELING OR THERAP$ OR

PYSCHOTHERAPY.AB.

23. SEARCH: HEALTH-EDUCATION#.DE.

24. SEARCH: HEALTH ADJ EDUCATION OR

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PATIENT ADJ EDUCATION OR

(PARENT$ ADJ EDUCATION).AB.

25. SEARCH: HEALTH ADJ EDUCATION OR

PATIENT ADJ EDUCATION OR

PARENT ADJ EDUCATION OR

PARENTAL ADJ EDUCATION OR

(PARENTS ADJ EDUCATION).AB.

26. SEARCH: MEETING OR VISIT OR OUTREACH

OR OUTPATIENT OR TALK OR

TRAINING OR LECTURE OR GUIDE

OR GUIDANCE.AB.

27. SEARCH: LEAFLET OR BOOKLET OR POSTER

OR PAMPHLET OR INFORMATION

ADJ SHEET OR FREQUENTLY ADJ

ASKED ADJ QUESTIONS OR DVD

OR CD OR VIDEO OR CDROM OR

COMPUTER.AB.

28. SEARCH: RESOURCE-GUIDES-

PUBLICATION-TYPE#.DE.

29. SEARCH: AUDIOVISUAL-AIDS#.DE.

30. SEARCH: EDUCATIONAL-TECHNOLOGY#.DE.

31. SEARCH: 1 OR 2 OR 3 OR 4 OR 5 OR 6 OR 7

OR 8 OR 9 OR 10 OR 11 OR 12 OR

13 OR 14 OR 15 OR 16 OR 17 OR

18 OR 19 OR 20 OR 21 OR 22 OR

23 OR 24 OR 25 OR 26 OR 27 OR

28 OR 29 OR 30

32. SEARCH: COMMUNITY-INSTITUTIONAL-

RELATIONS#.DE.

33. SEARCH: (HOME ADJ VISIT).AB.

34. SEARCH: GUIDE OR GUIDANCE.AB.

35. SEARCH: 32 OR 33 OR 34

36. SEARCH: 31 OR 35

37. SEARCH: INFANT-PREMATURE#.DE.

38. SEARCH: INFANT-LOW-BIRTH-

WEIGHT#.DE.

39. SEARCH: INFANT-VERY-LOW-BIRTH-

WEIGHT#.DE.

40. SEARCH: INTENSIVE-CARE-NEONATAL#.DE.

41. SEARCH: INTENSIVE-CARE-UNITS-

NEONATAL#.DE.

42. SEARCH: (SPECIAL ADJ CARE ADJ BABY ADJ

UNIT).AB.

43. SEARCH: SPECIAL ADJ CARE NEAR

BABY.AB.

44. SEARCH: (PRETERM OR PREMATURE) NEAR

(BABY OR BIRTH OR INFANT OR

CHILD).AB.

45. SEARCH: EARLY NEAR (BABY OR BIRTH OR

INFANT OR CHILD).AB.

46. SEARCH: 37 OR 38 OR 39 OR 40 OR 41 OR

42 OR 43 OR 44 OR 45

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47. SEARCH: 36 AND 46

48. SEARCH: PARENTS#.W..DE.

49. SEARCH: MOTHERS#.W..DE.

50. SEARCH: FATHERS#.W..DE.

51. SEARCH: CAREGIVERS#.W..DE.

52. SEARCH: MATERNITY NEXT PATIENT

53. SEARCH: FAMILY.AB.

54. SEARCH: 48 OR 49 OR 50 OR 51 OR 52 OR

53

55. SEARCH: 47 AND 54

56. SEARCH: 48 OR 49 OR 50 OR 51 OR 52

57. SEARCH: INFORMATION OR INFORM$ OR

INFORMATION ADJ SEEKING ADJ

BEHAVIOUR OR INFORMATION

ADJ NEEDS OR (PARENT ADJ

INFORMATION).AB.

58. SEARCH: INFORMATION OR INFORM.AB.

59. SEARCH: 1 OR 3 OR 4 OR 5 OR 6 OR 7 OR 8

OR 9 OR 10 OR 11 OR 12 OR 13

OR 14 OR 15 OR 16 OR 17 OR 18

OR 19 OR 20 OR 21 OR 22 OR 23

OR 24 OR 25 OR 26 OR 27 OR 28

OR 29 OR 30 OR 58

60. SEARCH: 46 AND 56 AND 59

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2a. Randomised controlled trials:

Author

(Year)

Country

Study

design

Intervention Outcome

measure

No of cases No. of

controls

Statistically significant

Quality

(SIGN)

Glazebrook

et al

2007

UK

RCT Nursing Child Assessment Teaching Scale

(NCATS) at neonatal unit, with optional follow-

up

Parental Stress

Index (PSI)

Home

Observation

for

Measurement

of the

Environment

(HOME)

99 111 No significant differences reported at discharge or at 3

months after discharge.

1+

Koh

2007

Australia

RCT Recording doctors consultation Information

recall

91% of

mothers in the

tape group

listened to the

tape (once by

day 10, twice

by four

months, and

three times by

12 months;

range 1-10).

93 93 At 10 days and four months, mothers in the tape group

recalled significantly more information about diagnosis,

treatment and outcomes than control group.

Recall at 10 days:1.35 (1.08 to 1.69) p<0.007, treatment

1.35 (1.00 to 1.84) and outcome 1.24 (1.05 to 1.47),

p<0.009 than mothers in the control group.

Recall at 4 months: diagnosis 1.27 (0.99 to 1.63) p<0.05,

treatment 1.35 (1.00 to 1.84) p<0.045, and outcome 1.75

(1.27 to 2.4), p<0.004

No statistically significant differences were found between

the groups in satisfaction with conversations (10 days),

postnatal depression and anxiety scores (10 days, four and

12 months), and stress about parenting (12 months).

1+

Van der Pal

2007

Netherlands

RCT NIDCAP PSI

Parents of

Mother and

Baby Scale

Nurse Parent

Support Tool

94 84 No significant differences were reported in Parental Stress

Index, Confidence of parents, or perceived nursing support

at 1 to 2 weeks after birth

1+

Kaaresen

2006

RCT Mother-Infant Transaction Program

The intervention consisted of 8 sessions shortly

PSI 71 69

preterm

Early-intervention program reduces parenting stress in both

mothers and fathers during the first year after a preterm birth

1+

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before discharge and 4 home visits by specially

trained nurses focusing on the infant’s unique

characteristics, temperament, and developmental

potential and the interaction between the infant

and the parents.

75 term to a level comparable to their term peers




Lai

2006

Taiwan

RCT Effects of kangaroo care combined with music State-Trait

Anxiety

Inventory

(STAI)

15 15 Music during KC also resulted in significantly lower

maternal anxiety in the treatment group on day 3 of the

interention (t (19.6) =−2.14, p<.05). Maternal state anxiety

improved daily, indicating a cumulative dose effect

(F(1.49,40.39)=5.81, p<.01). Anxiety levels in the control

remained unchanged

1+

Melnyk

2006

USA

RCT Creating Opportunities for Parent Empowerment

(COPE) - Information and behavioural activities

about appearance and behavioural characteristics

of preterm infants and how best to parent them.

Infant length

of stay

Parental

Stressor Scale

(PSS)

State-Trait

Anxiety Scale

(STAI)

Index of

Parental Belief

Scale

147 Mothers

81 Fathers

113

Mothers

73 Fathers

Mothers in the intervention group reported significantly less

stress and less depression and anxiety at 2 months after

birth.

Anxiety: 28.72 (27.31-30.12) vs 30.83 (29.23-32.42)p<0.05

Depression: 5.56 (4.66-6.45) vs 7.21 (6.20-8.23)p<0.02

PSS: 3.29 (3.09-3.49) vs 3.58 (3.35-3.80), p<0.05

Parental Knowledge: 32(31.63-33.01)vs 30.50 (29.73-

31.27)p<0.001

There were no significant differences found for Fathers

anxiety or depressive symptoms.

Infant length of stay at the NICU and at the hospital was

significantly lower in the intervention group (3.8 days less in

NICU, 3.9 days less in hospital p<0.05

1++

Browne

2005

USA

RCT Family based intervention (Gp1: demonstration of

pre-term baby behavioural cues; Gp2:viewed

educational video and books about pre-term

babies

Nursing Child

Assessment

Scale

(NCAFS) and

Knowledge of

Preterm Infant

Behavior

Scale (KPIB)

Gp1: 28

Gp2: 31

25 Intervention group reported significantly greater sensitive

interactions with pre-term babies, and significantly greater

knowledge of pre-term babies than controls at 1 month after

discharge

(NCAFS 45.65, 6.20vs. 47.43, 7.36 vs. 48.88, 7.41, p<0.05;

mean KPIB 23.32, SD 5.88 in group 1 vs. 25.90, 5.30, in

group 2 vs. 19.58, 5.01 in group 3, p<0.001)

1+

Ferber

2004

Israel

RCT Baby massage:

I= to receive 15 massages 3 times per day for 5

days.


Gp2: Researchers conduct massage

Coding

Interactive

Behaviour

Assessment

for newborn

Gp 1: 18

Gp 2: 18

19 Significant results report that at 3 months, mothers of

massaged infants were less intrusive, and interactions were

more reciprocal.


1+

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http://0-www.sciencedirect.com.pugwash.lib.warwick.ac.uk/science?_ob=MathURL&_method=retrieve&_udi=B6T7T-4GJK8FY-1&_mathId=mml20&_user=585204&_cdi=5067&_rdoc=3&_acct=C000029838&_version=1&_userid=585204&md5=3810bd263b9d96c0822ca055948fa424

http://0-www.sciencedirect.com.pugwash.lib.warwick.ac.uk/science?_ob=MathURL&_method=retrieve&_udi=B6T7T-4GJK8FY-1&_mathId=mml21&_user=585204&_cdi=5067&_rdoc=3&_acct=C000029838&_version=1&_userid=585204&md5=52e0d9a7d3ef42d83248dac847814000


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Gp 3 controls Maternal Intrusiveness(MI)-1.97+0.91

Gp2: DR – 2.46+0.99

MI – 1.68+0.63

Gp3: DR – 1.66+0.68

MI – 2.54+1.01

DR: F=4.69,p<0.01

MI: F=4.05,p<0.02

No significant difference in maternal sensitivity was

reported.

Als

2003

USA



PSI (Parental

Stress Index)

38 38 Mothers in the intervention group reported significantly

more favourable scores than the control group.

Hospital 1: I= 35.7 (sd 21.3)

C=44.9 (sd34.2)


C=65.2 (sd27.5)


C=55.9 (sd22.5)



1++

Gray, 2000,

USA

RCT Babylink individual website information

(CareLink)

The Picker

Institute’s

Neonatal

Intensive Care

Unit Family

Satisfaction

survey

61% (31/51 parents completed the questionnaire)

BabyLink families reported significantly higher scores in all

other dimensions except in coordination of care. Within the

dimension of overall quality, BabyLink families were 85%

less likely to report problems with the duration

of their child’s hospitalization (6.7% vs 43.8%; p<04). Of

those reporting problems most noted that their NICU stay

was shorter than they felt necessary.

Interestingly, even though the same visitation policies

applied to both groups, BabyLink families were also less

likely to report problems when asked if the unit’s visitation

policy met the needs of their other family members (13.3%

vs 50%; p<02).

BabyLink families also showed a trend toward fewer

problems related to receiving practical support from the

NICU (33.3% vs 68.7%; p<08).

CareLink significantly improves family

1+

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satisfaction with inpatient VLBW care

Hall 2002

Canada



Parental sense

of competence

scale

Maternal

confidence

questionnaire

Influence of

specific

referents scale

30 30 No significant differences in maternal confidence or

competence between weighed or not-weighed infants

1-

Huckaby

1999

USA

RCT Photograph of baby given to mother to take with

them while baby on neonatal unit

Bonding

Observation

Checklist

(BOCL)

Physical

Examination

Observation

Checklist

(PEOCL)

20 20 Mothers with picture had significantly better scores on

bonding measure than those without picture (p<0.001 for

BOCL and p<0.01 on PEOCL)

1+

Tessier

1998

Columbia

RCT Effects of Kangaroo care Mothers

perception of

premature

babies

questionnaire

246 246 Kangaroo care significantly increased mother’s sense of

competence in mothering their baby (F(1481) 10.36, P

.001), and was significantly increased maternal sensitivity to

their baby at the neonatal unit. ( F(1481) 3.71, P .05).

This improved perception of their baby effect is related to a

subjective “bonding effect” that may be

understood readily by the empowering nature of the

KMC intervention. The study also reported a negative effect

on the feelings of received support from health professionals

of mothers practicing KMC (F 5.03, P .03).

Kangaroo care significantly reduced length of stay

especially in lighter babies.

Two-way analysis of variance stratifying by birth weight

showed that the savings in hospital stays were clearly related

to weight at birth: an interaction effect ( F(3480) 4.06, P

.01) shows that the maximum saving in the KMC group was

observed in infants weighing 1501 g (4.5 to 6.7 days),

whereas in infants weighing 1500g, the length of hospital

stay was virtually identical in both groups

1+

Meyer 1994

USA

RCT Family based intervention (Psychological

intervention for family, teaching care and

Parental

Stressor scale

34 34 Intervention group reported significantly less stress (PSS)

and reported significantly less depression (BDS) at

1+

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37

behavioural cues of baby, home discharge plan) (PSS)

Maternal self

esteem

Inventory,

Beck

Depression

Scale (BDS),

Family

Environment

Scale

discharge.

BDI: Int: 11% vs. 44%, p<0.05; 39% vs 31% NS.

PSS: Int:2.4 ± 1.0; 2.0 ± 0.8 vs Con 2.4 ± 0.9; 2.6 ± 0.8

p<0.05


Spiker

1993

USA

RCT Home Support

(Infant Health and Development Program

(IHDP) – Home visits from discharge up to 36

months

Quality of

assistance in

parenting pre-

term baby

Supportive

presence for

parents of pre-

term infants

271 412 Intervention group reported significantly better quality of

assistance ratings than control group (I: 3.6 [1.5], vs

3.3[1.5], p<0.05), but no significant difference on supportive

presence was reported. Most outcomes in this study were

baby outcomes.

1-

Cobiella

1990

USA




b) Video-tape in emotion-focussed strategies to

manage anxiety

State-Trait

Anxiety

Inventory

(STAI),

Depression

Adjective

Checklist

(DACL)

Gp. A – 10

Gp. B - 10

10 On post-treatment follow-up both the problem-focused and

emotion-focused treatment groups were significantly less

anxious than the controls and lower levels of depression

were observed for the emotion-focused group

STAI: PF-t(11)=2 71 p<0.01

EF-t2 56 p<0.02

DACL: PF – NS

EF-t(12)=2 36, p<0.03

1-

Parker-

Loewen

1987

Canada

RCT 8 X 40 minute interaction coaching to encourage

sensitive responding by mothers

Satisfaction

with Parenting

Scale

Knowledge of

Infant

Development

Scale

Life

experiences

survey

Interaction

rating scale

35 35 No significant difference between treatment and control

group on interaction or knowledge of infant development or

satisfaction with parenting

1-

Barrera

1986

Canada

RCT Teaching developmental care HOME

Parent-infant

interactions

40 40 At 4 mths and 16 mths, mothers in the Parent-Infant

intervention group and full term control group were

significantly better maternal responsiveness and mother-

infant interaction compared to the pre-term baby control

1-

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38

group.

Manova:

Maternal rseponsiveness

I-7.32, FTC – 7.44, C- 6.41, f=6.78, p<0.001

Maternal involvement:

I=7.23, FTC-7.16, C-6.26, f=2.70, p<0.05

Nurcombe

1984

USA



Hereford

Parent

Attitude

Survey

Seashore Self

Confidence

Rating Paired

Comparison

Questionn-aire

37 36

Intervention group scored better on maternal adaptation

(role satisfaction, attitudes to child-rearing, self confidence)

than low birth weight controls (F(3, 87), p<0.030.


Maternal satisfaction F (2,89), 4.55, p<0.013



Full term controls scored better than combined low birth

weight group (F [3,87], 3.27, p=0.025).

1+

2b. Quasi- experimental and cohort studies.

Author

(Year)

Country

Study

design

Intervention Outcome measure No of cases No. of

controls

Statistically significant results Quality

(SIGN)

Byers

2006

USA

Cohort Family-centred care/developmental supportive

care

Questionnaire

developed for study

to measure parents

perceptions and

satisfaction.

Study mainly reports

baby outcomes

57 57 No differences in parent perception or satisfaction with the neonatal unit 2-

Jotzo

2005

Germany

Cohort Psychological intervention to reduce stress at

neonatal unit (One off psychological

intervention to help parents cope with stress)

Questionnaire:

Impact of events

scale (IES)

Trauma experiences

measure

25 25 Mothers in intervention group had significantly lower traumatic impact from

preterm birth (lower overall symptoms: traumatic impact I 25.2 (SD 13.9), C

37.5 (SD 19.2), mean difference 12.28 (2.74-21.82, p=0.013; lower avoidance I

7.7 (SD 5.3), C 12.4 (SD 8.4), mean difference 4.65 (0.67-8.69), p=0.023 and

hyperarousal, I 5.9 (SD 4.7), C9.5 (SD 5.7), mean difference – 3.56 (0.61 –

6.51), p=0.019; lower intrusion symptoms but not significant). Control group:

76% of mothers showed clinically significant psychological trauma at discharge

2+

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39

vs. 36% (p<0.01) in intervention group.

Penticuff

2005 USA

Cohort Discussion around Infant progress chart Comprehension of

infant medical

condition and

satisfaction with

collaboration with

health professionals

while baby at

neonatal unit

77 77 Intervention group had fewer unrealistic concerns (ANOVA): (4.32 (0.86) vs

8.56 (0.57), p<0.018; less uncertainty about the infant medical condition 1.92

(0.30) vs 3.52 (0.54), p< 0.003; had less decision conflict 45.88 (2.33) vs 59.10

(2.32), p<0.001; more satisfaction with medical decisions process 120.20

(4.07), 104.95 (4.33), p<0.012; more satisfaction with decision input 33.44

(1.30) vs 30.05 (1.21), p<0.058.

No significant difference was reported in satisfaction of care for the infant by

HC staff, and in satisfaction with decision made.

2++

Byers

2003

USA

Cohort Co-bedding multiples in same incubator NIDCAP infant

behaviour

State-Trait Anxiety

Inventory

Maternal

Attachment

Inventory

Parental satisfaction

tool

16 21 No significant results reported 2-

Preyde

2003

Canada

Cohort

Parent to Parent Peer Support Parental Stressor

scale (x)

Sate-Trait Anxiety

Scale (Spielberger)

32 28 Intervention group better scores on all measures at 4 or 16 weeks (groups were

equivalent at baseline), e.g. mean PSS score 1.54 (1.3-1.7) in intervention

group at 4 weeks vs. 2.93 (2.7-3.1) in controls, p<0.001

At 4 weeks mean PSS score was significantly less in the intervention group –

1.54 (1.3-1.7) vs 2.93 (2.7-3.1), p<0.001.

At 16 weeks mean anxiety score, mean depression score, and perceived support

were significantly less in the intervention group: anxiety - 31.4 (27.2-35.4) vs

38.6 (34.6-42.7), p<0.05; depression - 2.20 (0.89-3.60) vs 4.88 (3.51-6.17),

p<0.01; perceived support – 6.49 (6.02-6.82) vs 5.48 (5.09-5.94), p<0.01.

There were no different in trait anxiety between the groups at any time period.

2++

Feldman

2002

Israel

Cohort Effects of Kangaroo care Mother-Infant

interaction scale

Maternal depression

Mothers perceptions

HOME

73 73 At 37 weeks gestational age: After kangaroo care, interactions more positive,

mothers showed more positive affect, touch, adaptation to infant cues, infants

more alertness and less gaze aversion, mothers less depressed & viewed infants

as less abnormal. Less maternal depression [KC mean 6.68 (5.55) vs control

9.05 (4.27), F=5.68, p<0.05].

At 3 months corrected age: mothers and fathers of kangaroo care infants more

sensitive and provided better home environment.

KC Mothers provided a better home environment Manova at 3 months –

HOME: Wilks F (df=7,123), 2.99, p<0.01. KC fathers provided a better home

2+

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40

environment – HOME: Wilks F (df=7,110), 2.45, p<0.05.

At 6 months corrected age: kangaroo care mothers more sensitive (maternal

sensitivity: KC mean 4.20 (0.64) vs control mean 3.86 (0.76, univariate 5.36,

p<0.05) & infants scored higher on Bayley Mental Development Index (96.39

vs. 91.81, p<0.01) and Psychomotor Development Index (85.47 vs. 80.53,

p<0.05)

Kurz 2002

Austria

Cohort Home support (Phone call and counselling of

parents after returning home) for parents of

babies with monitors

Questionnaire about

monitor use, stress

reported by monitor

use, and satisfaction

90 70 Home monitoring considered reassuring for 60% of families. After intensive

counselling introduced, parents liked the instruction better (74% vs. 44% very

satisfied; 24% vs. 51% satisfied; 2% vs. 5% not satisfied, p<0.005)), were less

stressed by the monitor (42% vs. 63% stressed by false alarms, p<0.05) and

reacted less aggressively to monitor alarms (8% vs. 24% reacted by vigorously

shaking or lifting baby, p<0.05); used monitor mainly during sleeping periods;

used monitor for less time (6.1 months vs. 7.6 months, p<0.05). Counselling did

not reduce anxiety.

2+

Ortenstrand

2001

Sweden


Domiciliary nurse made an individual care and

discharge plan together with the parents.

During these planning sessions, parent’s

knowledge of how to care for their pre-term

infant were checked and supplemented. The

nurse was available for home visit/ telephone

consultation from Monday to Friday, and at

weekends parents could contact the neonatal

ward

STAI 40 35 No differences in mothers’ Trait anxiety at 1st or 2nd assessment. State

(situational) anxiety lower for EDG mothers at 1st assessment (EDG 30.9 [SD

6.2] vs. CG 36.6 [8.4], p<0.01.

Fathers showed a significant difference in trait anxiety at both 1st and 2nd study

time period (30.1 (5.8) vs 33.5 (7.7), p<0.05, but only a significant difference in

state anxiety at the 1st assessment (29.5 [5.4] vs32.8 [9.1], p<0.08.

At 1 yr, no difference in recollection of anxiety in caring for the infant or in

experiences of mental imbalance related to the birth of the infant

2+

Finello

1998

USA

Cohort Home Support

Gp1: Home healthcare and home visitng

Gp2: Home healthcare only

Gp3: Home visiting only

1 week after

discharge:

HOME

CES-D

FACES II

6 mths after:

HOME

12 months:

CES-D, FACESII

HOME

81 in total Not

reported

Interventions improved the home environment (at 1 month, mean HOME 27.2,

SD 6.0 for group 1 vs. 24.2, 2.7 for group 2 vs. 30.0, 6.2 for group 3 vs. 22.7,

3.3 for group 4, p<0.001; at 6 months, 33.7, 5.9 vs. 30.2, 4.3 vs. 34.4, 4.3 vs.

28.9, 5.0, p=0.003; at 12 months, 35.2, 5.2 vs. 31.2, 3.8 vs. 35.6, 5.3 vs. 30.5,

5.0, p=0.005). No difference between groups on FACES II at 1 or 12 months,

or on maternal parenting satisfaction. The latter was more strongly associated

with reports of support from husband (p<0.001), friend support (p<0.001) and

family support (p<0.001). Mean depression score at 1 month 18.5 (SD 11.59,

range 0-48 on a total scale range of 0-60; 16 considered cut-off for clinical

depression (no differences between groups). Mean CES-D at 12 months 19.76,

SD 10.21, range 2-42, still indicating clinically significant levels of depression.


2+

Brown

1994 USA

Quasi

experimen

tal

Booklet, videotape and practical session. for

parents of broncho-pulmonary dysplasia

discharged from tertiary care centre.

Pre-test Post-test

study

Pre-test of

18 primary

caregivers of

10 infants

Post-test scores (immediate mean = 17.33 [SD 3.91]; delayed 17.17 [4.41])

significantly higher than pretest scores (14.38 [3.72], p<0.01)

2+

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Education on physical characteristics of infants

on continuous low-flow oxygen & their care.

Psychosocial development of infant, parental

needs, oxygen equipment, CPR in NICU

knowledge

immediately before

and post-test

immediately after

programme; post-

test repeated 6

weeks after

discharge

Lindsay

1993

USA

Cohort Parent to Parent Peer support for parents with

critically ill pre-term babies.

Parent report NR NR Numerical data not reported in paper

Reported benefit to parents: emotional support + Information support

2-

Rauh

1990

USA

Cohort Vermont Mother-Infant Transaction

Programme (teach parents to appreciate infants

unique characteristics. teach behavioural cues,

teach parents to respond to infant, enhance

mothers enjoyment of baby).

Maternal Role

Satisfaction

questionnaire

Self-Confidence

rating


40 41 At 6 months: significantly better intervention effects for maternal role

satisfaction, self-confidence and perception of infant temperament in

intervention group; no difference on maternal attitudes to child-rearing. Data

not given in paper.

2-

Leonard

1989

USA

Cohort Educational support programme for infants on

home monitors (Infant Apnea Evaluation

Programmes (IAEP)L

Gp1 – with home monitoring



Symptom checklist-

90, schedule of

recent events,

satisfaction - all in

interview 2 wks

after going home

Gp1-40 Gp 2- 30

Gp3 - 32

Psychological symptoms highest in parents of non-monitored premature infants

(M - 0.2845 [0 – 0.82] vs , NM – 0.4507 [0-1.3], p=0.037 ); particularly fathers

of non-monitored infants scoring high on depression (0.6846)).

Support highest in monitored infants (p=0.005)

NS on family satisfaction

.

2+

Resnick

1988 USA

Cohort Educational developmental Intervention

Programme at home – teach parents to use:

parent’s voice tape, massage, passive range of

motion, exercises) and twice-monthly

interventions at home by child development

specialists through 12 months adjusted age (e.g.

language and social skills enrichment exercises,

cognitive development, motor exercises,

parenting activities)

Greenspan-

Lieberman

Observations

System (GLOS) to

analyse infant-

caregiver

interactions at 6 and

12 months

21 20 Parent child positive verbal scores significantly higher in treatment than control

groups (2.91 vs. 2.08), p=0.02. Intervention group dyads had fewer negative

verbal interactions (0.07 vs. 0.17, p=0.03).

The developmental intervention benefited the quality of the parent-infant

interaction at home, as well as benefiting the infant development.

2-

Ross

1984

USA

Cohort Teaching developmental care at home to lower

socio-economic parents

HOME

Maternal Attitudes

Scale

Maternal

developmental

Expectationsand

child rearing

attitudes survey

Baby outcomes (not

44 40 Intervention group reported significantly higher HOME scores (total score 38.4

vs. 34.9, p<0.001). No other significant differences reported

2+

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reported here)

Piecuch

1983

USA

Cohort videophone No. of calls made to

neonatal unit while

baby at unit

17 17 Mean number of telephone calls to NICU used as proxy for interest in

newborns. Mothers with access to videophone made more calls: (1.0 vs. 0.2, p<

0.05) when mothers hospitalised; (0.9 vs. 0.3, p<0.05) when mother discharged.

Mothers appreciated videophone; relieved at being able to see infants; infant’s

condition not as bad as they had imagined; many talked to infant even though

only viewing an image; wanted to see close-ups of hands and feet as well as

face.

2 -

2c. Non-controlled studies (e.g. case series, cross-sectional, qualitative)

Author

(Year)

Country

Study design Objective Setting Study design/ outcome

measures

Intervention Results Authors

Conclusions

Sign

Jones et al,

2007,

Australia

Qualitative To report

mothers’ and

fathers’

perceptions

of effective

and

ineffective

communicati

on by nurses

in the

neonatal

intensive

care unit

(NICU)

environment

NICU

20 mothers

and 13 fathers

Semi-structured interviews None The most frequently mentioned strategies

for effective communication were

discourse management and emotional

expression, highlighting the importance

for parents of communication that is both

nurturing and shares the exchange of

information as equal partners.

Parents valued communication that was

two-way and involved informal chatting

as well as more formal discussions.

Parents wanted provision of information

in a reassuring and respectful way. The

study highlights that not only do parents

simply want lots of information they also

want consistent information.

Strategies mentioned for effective

communication were about

shared management of the interaction and

appropriate support and reassurance by

nurses.

Mothers emphasised more being encouraged

as equal partners in the care of their infant.

3

Buarque,

2006

Qualitative To

investigate

the influence

of support

groups on

the family of

risk newborn

infants and

Neonatal unit

13 mothers,

six fathers,

two

grandmothers

and 16

healthcare

workers

Semi-structured interviews None The analysis revealed that the support

group to the family of risk newborns

provided parents and family members

with information, emotional support and

strengthening so that they could come to

terms with the birth of their child and

his/her admission to the neonatal unit, in

addition to enabling parents to take care

The support group to the family of risk

newborns uses an approach that is based on

family-centered care. These principles allow

restoring parental competence, helping

healthcare workers to respect values

and feelings of family members, and

establishing a collaborative work between

parents and healthcare workers in

3

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on neonatal

unit workers.

of the newborn infant. There was

interpersonal growth in the interaction

between parents, family members, and

healthcare workers.

the neonatal unit.

Hurst et al,

2006

Qualitative To identify

parents'

utilization

and

evaluation of

a support

program

based in a

newborn

intensive

care unit

(NICU)

NICU

477 parents

utilised

support

service, 48

completed

survey

Program records and a survey

developed by the author

documented parental use and

evaluation of services. Data

analysis consisted of

descriptive statistics and

qualitative content analysis

Support

programme that

offered a

combination of

formats for

support services:

group support,

one-to-one

support, and

telephone support

78% utilized 1 support service format

exclusively. Eighteen percent utilized 2

support formats concurrently. A

subsample of 48 parents completed an

evaluation survey. Group support

offered more opportunities for families to

problem-solve communication issues

with nursery personnel and provide

information that assisted parents'

involvement in their babies' care.

Utilising more than one support format

provided greater support for parents.

Parent support programs that utilize only one

type of format may not be optimal for

providing the range of support needed by

many NICU families. Parent support

programs offer an important mechanism to

assess provider approaches to facilitate

family-centered care.

3

Kowalski

2006,

Cross-

sectional

To determine

what

information

is wanted,

who

provides

information

and what

expectations

parents have

regarding

obtaining

information.

Neonatal unit A 19-item questionnaire was

given to the parents of

infants 32 weeks or younger

prior to discharge from the

NICU.

None Out of the 101 parents who consented,

almost all of the parents (96%) felt that

‘the medical team gave them the

information they needed

about their baby’ and that the

‘neonatologist did a good job of

communicating’ with them (91%).

However, the nurse was chosen as ‘the

person who spent the most time

explaining the baby’s condition’, ‘the

best source of information,’ and the

person who told them ‘about important

changes in their baby’s condition’

Although the neonatologist’s role in parent

education is satisfactory, the parents

identified the nurses as the primary source of

information.

3

Wielenga

2006,

Netherlands

Qualitative Evaluation

of NIDCAP

NICU NICU-Parent Satisfaction

Form and the Nurse Parent

Support Tool

NIDCAP Parents were significantly more satisfied

with care given according to NIDCAP

principles than they were with the

traditional care for their premature born

babies.

3

Bennett

2005 UK

Qualitative Evaluation

of Rooming

in (care by

parent)

NICU

Interview Rooming in (care

by parent)

Most found it an extremely positive

experience (scared but realised the

opportunity to know each other more,

feel a bit more in charge; promoting

breastfeeding, increased bonding &

confidence to take baby home).

Most mothers reported ‘rooming in’ to be a

useful, informative time

3

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Broedsgaard

2005

Denmark

To present

the parents’

experiences

of an

educational

programme

NICU

37 families

with premature

infants (<34

weeks)

Descriptive study

Semi-structured interviews and

focus groups

Educational

programme (topic

group discussions)

for parents during

hospitalisation;

health visitor

coordinator on

NICU; visit and

orientation about

NICU for family’s

health visitor;

multidisciplinary

discharge

conference;

booklets for

parents and health

care providers;

parents’ evenings

once a month after

discharge

Families valued support and guidance

from coordinator; having named contact

nurse throughout child’s stay; continuity

of care; felt secure when they went

home; NICU personnel and own health

visitor collaborated well. They received

extra visits from health visitor (most 4-6

extra but some >7 extra) in the first year

and this was in accordance with their

needs. Frustrated that mothers were on

postnatal ward with mothers of full-term

infants but they were separated from

their infants (NICU on another floor).

Felt that their needs not met in maternity

unit. Felt assisted and reassured in

NICU; the parents needed special care to

tackle their situation and needed lots of

information (repeated several times, plus

written materials to reinforce). Discharge

was time of anxiety; shock; needed to

adjust; return home helped by meeting

health visitor on NICU; 3-4 days

rooming-in on NICU helped preparing to

return home.

Intervention increased support, contributed to

confidence in caring for infant and infant

well-being after discharge.

3

Freer, 2005,

Scotland

Case study To report on

Babylink (an

individual

website

approach to

sharing

information

with parents)

NICU Descriptive reports from

parents

Babylink

individual website

information

Parents reported the benefits of having

access to information on their baby on a

daily basis. BabyLink has been

beneficial to families in communicating

complex information and humanising the

experience of neonatal intensive care.

An efficient means of keeping parents

informed about the care and progress of their

babies being cared for in the hospital’s

neonatal unit

3

Hawthorne

2005

UK

Cross-

sectional

To evaluate

Neonatal

Behavioural

Assessment

Scale

(NBAS) to

support

parent-infant

relationship.

Neonatal unit

22 parents of

premature

infants

22 Questionnaire developed

for study

Behavioural

assessment scale

Parents reported: NBAS helped parents

adjust to baby’s behaviours, increased

parents confidence in caring for their

baby, satisfied their information needs

about their baby.

NBAS can improve parents knowledge and

improve their confidence in caring for their

infant.

3

Remedios Qualitative To evaluate Neonatal unit Semi-structured interviews Baby message Parents reported feeling ‘closer’ to their For the parents of a premature baby, baby 3

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2005, USA the effect of

baby

massage on

the parents

of premature

infants

infants, and reported improved

confidence in caring for their infant.

Parents felt the baby massage was

beneficial to the infant and themselves.

massage can help improve the sense of

closeness to their infant and improve their


Prentice

2004

Australia

Qualitative To evaluate a

develop-

mental care

NICU –

parents inter-

viewed at

home

9 parents in

developmental

care group

compared with

8 historical

controls before

introduction of

this

programme

into NICU

Retro-spective: Interviews:

recall of mother’s health and

family functioning,

particularly after discharge

from NICU, review of family

photos and memorabilia

Developmental

care: forming

partnerships with

parents, Care by

Parent programme

Developmental care group parents felt

encouraged to be partners in infant’s care

(nervous of being hands-on but staff

insisted which helped; fathers especially

more than before); pre-DC parents were

more onlookers than partners;

inconsistency in amount of involvement

they were allowed (depended on staff on

duty); DC parents described comfort in

reading infant cues and more confidence

in responding; encouraged to dress baby

(normalising experience). Sense of

control & freedom when using Care by

Parent area; felt more as though it was

their baby. Pre-DC parents took time to

develop confidence once at home; DC

parents confident straight away. Partners

also more confident, more congruent,

both knew baby’s personality, felt they

knew baby really well. Both group

maintained vigilance; DC group less

anxious, more problem-solving, more

self-reliant, whereas pre-DC parents

found it difficult when there was no-one

to tell them what to do. DC practices

continued at home.

Developmental care seemed to help mitigate

stress and provide new ways of coping to

parents; encouraging an dinvolving the

parents in care & decision-making led to

greater self-reliance after discharge.

3

Jonsson

2003

Sweden

Qualitative To report on

an early

discharge &

home care

programme

NICU

23 parents (17

women + 6

men) of babies

on home care

programme

Interviews Home care

programme –

home visits at

parent request (1

day-1 week apart);

counselling &

supervision

Becoming a family: do not feel like a

family in NICU; shared infant with staff;

feeling gradually disappeared when they

went home.

Being at home: nervous; less conflict

between being with infant in hospital and

being with other children at home

Being reunited as a family; not having to

share baby with others

Feeling security: important for parents to

have access to information and advice:

Parents wanted to come home earlier to feel

like a family, but wanted security of access to

staff knowledge & support

3

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checked with checklist with the neonatal

nurses; had questions when they got

home

Needed accessibility, usually by

telephone, with home care team

Needed support from health care

professionals and relatives

Lawhorn

2002 USA

Case series To report on

a facilitating

parent

assessment

of infant

behaviour

and

supportive

responses

NICU

Convenience

sample of 10

infants

(≤1500g, ≤32

weeks,

appropriate for

gestational

age, no

congenital

abnormality) +

18 parents

Videotaped parent-infant

interactions

An individualised

nursing

intervention based

on assumptions of

parent and infant

competence;

discussion of

videotaped

interactions to

discuss infant cues

and promote

supportive

responses

The intervention enhanced the parents’

ability to appraise the infant’s behaviour

and respond in a supportive manner (data

not presented). Parents found it helpful in

getting to know their infant and being

more empowered in the infant’s care.

NICU staff should support parents in gaining

greater understanding of infant and sensitive

interactions; parents need to be active

collaborators in infant care

3

Fenwick,

2001,

Australia

Qualitative To

Gain a

greater

understandin

g of the

woman's

experience

of mothering

in

the nursery

and how

nurses' social

interaction

and verbal

exchanges

impacted on

this

experience

Special care

nursery

28 women

The average

age

of the women

was 28 years

(range 19±41)

15 gave

birth at 30

weeks or less.

Semi-structured interviews None Nurses engaging in such ‘chatting’

resulted in the development of

relationships that were reciprocal and

interdependent rather than undesirable or

difficult to achieve. Mothers described

this as personal, and forming friendships.

While women commented that all the

facilitative behaviours were important,

nurses who `chatted' in this way were

singled out particularly as

those that truly made a difference to their

nursery experience.

It was these nurses that all the women in

the study

identified as the people who `most'

facilitated their efforts to learn and take

up their role as mothers, feel in control of

the situation and, ultimately, assisted

them in developing a connected

relationship with their infants.

The results of this study relate to the

importance of the shared `social' interactions

between mother and nurse and the role these

played in developing `personal' and `equal'

relationships. This allowed the nurse to enter

the woman's world and to facilitate their

access to psychosocial information that

assisted them in validating the woman's

experiences, and helped them to plan

individualized care that met the needs of the

infant, mother and family

3

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Pearson

2001 USA


programme

to promote

positive

parenting in

NICU

(Parent’s

Circle)

NICU (level

III and special

care (level II)

nurseries

104 parents

(59 mothers +

45 fathers)

who attended

Parent’s

Circle, + 44

NICU or

special care

nurses

Interviews Parent’s Circle:

90-minute

information

session + support

to parents as they

cope with early

birth – allows

parents to tell

their story;

curriculum based

on parents’ needs,

includes

development, how

parents can help

baby, how baby

responds to

stimuli, learning

to read subtle cues

from infant&

respond

appropriately,

getting parents

involved in infant

care plan, sharing

resources

Parents learned that they: could still

parent even when baby is in hospital;

could receive support from people going

through similar experiences. They

helped normalise the experience, helped

parents to interact with their baby. Book

list and classes were available after

discharge. Staff reported that attending

the Parent’s Circle instils confidence in

parents, helps them read baby’s signals,

normalises, introduces concepts such as

kangaroo care that parents then want to

try.

Attending Parent’s Circle helped families

gain perspective, feel supported, learn key

developmental concepts, locate hospital and

community resources, and optimise

interaction with infant

3

Gannon

2000 USA

Case series To evaluate

‘Caring one

day at a

time’ book

NICU

5 pilot families

Survey

‘Caring one day at

a time’ book –

three-ring binder

book to organise

information about

child’s medical,

developmental

and financial

records from birth

until adolescence

and beyond

Allows parents to keep all information

together, speeding up process when they

have to see a new doctor for example &

giving parents more confidence; allows

parent to see child’s progress (giving

hope); allows new professionals to see

history/ current status/ current

medication etc written down

This family-centred approach with early

involvement of families in child’s care;

enhances communication between families

and professionals

3

White 2000

USA


feeding

support by

occupation-

nal therapists

(OTs)

NICU

9 parents of

premature

infants

receiving OT

services for

Interview

questionnaire

OTs involved in

parent education

in NICU (e.g.

oral-facial

stimulation,

positioning, oral

Parents reported receiving education

about oral-facial stimulation and oral

support techniques (9/9 reported),

positioning, typical feeding development

(8/9 reported); hands-on training and

demonstration reported most frequently.

Parents perceived OTs were providing

effective education & support in infant

feeding techniques

3

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48

feeding issues support

techniques, typical

feeding

development)

using

demonstration,

discussion, hands-

on training,

handouts, videos

etc.

Overall, parents felt ‘confident’ or ‘very

confident’ in their ability to understand

topics. 5/9 indicated they thought they

would not need additional help after

discharge; 3/9 felt they would; 1 unsure.

Langley

1999

UK

Cross-

sectional

study

To evaluate a

home

support -

Community

Neonatal

Service

Home

Questionnaire developed for

this study

Home support

programme

Families reported feeling supported, and

appreciated continuity of care after

discharge. This benefit was reported

more in vulnerable parents (isolated

mothers, mothers with babies who had

sleeping, crying or feeding problems).

Community Neonatal Service provided

important support to families where mothers

are vulnerable, or where infant has

difficulties.

3

Bracht

1998b

Canada

Cross-

sectional

To report

parent

perceptions

of NICU

follow-up

clinic

NICU

16 families

attending

clinic

Satisfaction survey – methods

not described

Integrated

Neonatal Follow-

Up Program:

comprehensive,

long-term

developmental

assessments,

diagnosis &

referral for

children at high

risk of

developmental

delay

All families reported that they were very

satisfied with services provided by

multidisciplinary team; they valued

information & support re high risk infant;

but needed more information re growth

& development, nutrition needs, medical

concerns (e.g. asthma).

Continuity of care provided by clinic staff

nurses provided: support, education, written

information; maintenance of rapport

developed during hospitalisation; and liaison

with community resources

3

Costello

1998

Canada

To assess

mothers’

perceptions

of Care by

Parent

programme

NICU and

Level II

nursery

6 mothers of

preterm infants

Interviews the day after Care

by Parent overnight stay in

hospital, and when baby home

at least 4 days

Care by Parent

programme –

mother stays with

baby in room near

NICU – assumes

all care but help at

hand if needed.

Mothers found Care by Parent reassuring

to confirm their own and the baby’s

readiness for discharge; builds

confidence in mother’s parenting

abilities; feeling more comfortable about

bringing baby home; feeling confident in

taking responsibility, making the right

decisions; feeling more secure that

mother would wake when baby cried &

be able to respond; reassured that baby

medically ready to go home (e.g. not

having apnoea spells). Helped mothers

Care by Parent gave mothers opportunity to

assume full responsibility for baby’s care

knowing that staff available if necessary. It

helped mothers learn caregiving and confirm

readiness for discharge.

3

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49

learn about infant’s pattern of behaviour

& responses to infant’s cues. Fail-safe

opportunity; taking responsibility with a

safety net. Opportunity to ‘test reality’ of

parenting – feeling more as though the

baby belonged to the mother not the

nurses; facilitates transition to

parenthood in reality; bridges gap

between hospital and home.

Elliott 1998

Canada


telephone

follow up

programme

to support

breast-

feeding

Home

20 mothers

Structured interview Telephone call

with structured

questions to

complete form

(e.g. feeding

patterns, any

problems, plan to

address problems,

any referrals

needed)

All mothers reported finding telephone

call helpful and increasing their

confidence in continuing to breast feed.

Telephone support can help mothers

breastfeed premature infants at home

3

Koh 1998

Australia

Cross-

sectional

To evaluate

tape-

recording

doctor-

patient

communicati

on

NICU

80 parents of

babies

admitted to

NICU

Questionnaire Tape recording

initial

conversation

between parents

and neonatologist

(covering baby’s

condition,

management,

likely progress

and outcome) and

subsequent

important

conversations and

giving parents the

tapes

Parent response rate=76% (75/99).

Mothers listened to the tape on average

2.5 times, Fathers listened to the tape on

average 1.8 times; tape usefulness rated

as 9 (SD: 7-10) by parents. 85% (44/75)

of parents who listened to the tapes again

found it contained things they had

forgotten – some mothers who had been

sedated had forgotten the conversation

had taken place. Relatives were also able

to listen to tape & saved parents

repeating what doctor had said. Parents

found tapes comforting & supportive. No

negative comments.

The tape recording of parent-doctor

consultations was useful to parents,

particularly in reminding them of information

they had forgotten or not heard due to anxiety

or sedation during the consultation.

3

Macnab

1998

Canada

Cross-

sectional

Evaluation

of Journal

writing

Special care

nursery (SCN)

73 parents

Survey 6 weeks after giving

information booklet on journal

writing

Giving

information about

journal writing

32% kept a journal; 73% found it

reduced their stress; 68% used it as a

means to address the most stressful

elements of the experience (most

stressful elements were the feelings

engendered by having a baby in special

care & interactions with staff; the same

Encouraging parents to keep a journal is a

constructive way to deal with SCN-related

stress.

3

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percentage as those talking things

through with a friend to reduce stress).

Journals were used to document

involvement in care (45%), record

keeping (36%) and organising thoughts

(27%). All those who kept a journal

recommended it to others. Positive

feelings were holding baby for the first

time; meeting & speaking with other

parents; openness and honesty of nursery

staff; impression that infant was loved

and cared for. Parents said the journal

would be a record for the child for later;

helped to record progress & show how

well parents coped. Parents made

suggestions that photos etc should be

included in the journals.

Griffin

1997

USA


tour of

neonatal unit

prior to birth

if high risk

pregnancy

diagnosed

NICU

10 mothers

3 fathers

Interview

Tour of NICU All parents recommended that parents

diagnosed with a high-risk pregnancy be

offered a prenatal tour of the NICU. The

tour benefited parents and (a) decreased

fears, (b) inspired hope for the infant's

prognosis, (c) provided reassurance

about the care in the NICU, and (d)

prepared parents for their infant's

hospitalization in the NICU

3

Swanson

1997 USA

Case series Evaluation

of neonatal

integrated

home care

program

NICU/ home Descriptive Neonatal

integrated Home

Care Program –

follow up care to

high risk neonates

at home, teaching

re specific infant

care needs (e.g.

feeding)

Program made it possible to bring home

baby, nurse provided help, support,

instruction & encouragement (e.g. with

nasogastric feeding tube)

Families supported to take high risk infants

home sooner, ease transition from NICU to

home & keep them home (i.e. reduce

readmissions)

3

Costello

1996

Canada

Qualitative To describe a

parent

information

binder

system of

individual-

ising info for

NICU ‘Written and verbal feedback’

on the binder – not formal

assessment

Parent

information

binder

Includes relevant

individualised

information for

Binder facilitates organisation of

information over time and therefore

parents were empowered to be active in

acquiring information relevant to their

particular infant; and had improved

understanding and ability to participate

in decision-making. Helps ensure

Facilitates collaboration between parents and

health professionals, keeps parents informed,

aids decision making.

3

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parents on

NICU

parents about their

infants – e.g.

admission,

feeding, parent

clinical, and

discharge. Binder

taken to weekly

parent support

group meetings

where info can be

added or questions

asked.

consistent communication between

health professionals and parents, and

health professionals know what has

already been shared with parents

Jarrett

1996

USA


of parent

support

programme

Neonatal unit Reported discussion Parents were

trained to be

parent partners –

being taught

factual

information and to

be active listeners.

Trained parents

matched with new

parents by infant

characteristics

Parents reported feeling less anxious and

less worried about their infant. The

program was meeting its goal of support

and programme provided a special

relationship where parents in the NICU

could take their worries and concerns.

This relationship was most often

nurtured through exchanges on the

telephone, but parents also met in the

parent lounge that was set up as part of

the parent support effort in the hospital.

New parents unanimously reported that

the most helpful thing about the program

was the comfort in talking with someone

who had experienced a similar situation.

The parent support programme has provided

parents with trained partner parents reducing

parents level of anxiety and improving their

confidence with their infant.

3

Drake 1995

USA

To assess a

method of

prioritising

information

needs of

parents for

discharge

NICU

Pilot study of

10 parents

Q-sort – ranking of topics in

order of priority to parents for

learning prior to discharge;

feedback on how easy Q-sort

was to complete

Card sort method

of prioritising

teaching/learning

topics that parents

need prior to

discharge

Parents sorted 14 topics into most

important, important, and least important

piles and had opportunity to add in 3

other topics they wanted. Parents’

highest priorities were infant CPR,

illness and development, with feeding,

giving medication & hygiene issues

medium priority and use of car seat &

getting help at home low priorities.

Parents and nurses found it helpful to

assess what parents needed to know –

better than closed questions to parents

like ‘Do you know how to give the baby

a bath?’ which can be threatening

Parents are the best sources to assess their

learning needs, and addressing topics parents

feel are important helps teaching and

learning, especially if nurse does not know

family well.

Legault Cross- Effects of NICU Satisfaction questionnaire Kangaroo (skin to Kangaroo method was preferred by Kangaroo method encourages early contact 3

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1995

Canada

sectional kangaroo

(skin to skin)

care

61 mother-

infant dyads

experiencing

both

traditional and

kangaroo-type

transfers from

incubator

Maternal Satisfaction

Question-naire

skin) care 73.8% of mothers, mainly because the

infant was closer to them and they could

touch them more easily.

with infant& induces feelings of wellbeing &

fulfilment in parents

Affonso

1993, USA

Qaultiative Evaluation

of

Skin to skin

care (SSC)

for

premature

infants

NICU

Mothers

Interview Kangaroo care SSC provided a way for mothers to know

their infants, to develop strong positive

feelings towards them, and to reconcile

their feelings about having a premature

birth, so that emotional healing could

take place.

Kangaroo care improved mother-infant

interactions.

3

Gale 1993

USA

Case series Effects of

kangaroo

(skin to skin)

care

NICU

25 intubated

infants and

their parents

Interviews Kangaroo (skin to

skin) care

Parents described kangaroo care as

beneficial, giving stronger identity with

and knowledge of infant; greater

confidence in infant’s need for them and

their ability to need these needs; greater

confidence in asking questions

Nurses can support parental attachment by

supporting kangaroo holding

3

Meier 1993

USA

Cross-

sectional

Breast

feeding

support

NICU

132 parents of

premature

infants

Survey Breast feeding

intervention

record

Mothers more likely to be breast feeding

than comparable populations

Breast feeding support encourages mothers in

the NICU to breast feed and to continue to

breast feed for longer.

3

Culp 1989

USA

Cohort Demonstra-

ting

assessment

of Premature

Infant

Behavior

(APIB)

NICU

14 couples +

premature

infants (<32

weeks)

Alternate allocation to

demonstra-tion of assessment

(2 weeks before assessment of

outcome) or not until

afterwards

STAI

Neonatal Perception

Inventorry

Demonstrating

assessment of

Premature Infant

Behavior (APIB)

Intervention fathers reported lower

anxiety than non-intervention fathers

(p<0.05).Both mothers and fathers in

intervention group had more realistic

perception of newborns (p<0.04).

Intervention mothers more aware of

newborn’s abilities to shut out disturbing

stimulation on repeated exposure

(p<0.02)

Intervention appeared to reduce paternal

anxiety and fostered more realistic

perceptions of the premature infant

3

Szajnberg

1987, USA

Qualitative

(within

cohort for

infant

outcomes)

Evaluation

of Brazelton

Newborn

Behavioural

Assessment

Scale

Home Structured interview BNBAS At 6 months, mothers in the intervention

group remembered more details from the

BNBAS than control mothers did of the

standard physical examinations.

Intervention mothers tried more exam

items at home and found more of the

3

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(BNBAS) items helpful. There was a trend for

mothers to visit their infants more often

after the intervention.

Zeanah

1984 USA

Case reports Psycho-

therapy

NICU

Interview Psychotherapy Psychotherapy helped parents accept

their feelings and conflicts as common to

many NICU parents; Case conferences

helped clarify misconceptions that had

arisen because of the large number of

people involved in baby’s care. When

unable to travel to unit, calls kept parents

informed, enhanced participation;

consistency maintained in information

given, questions encouraged.

Parents were encouraged to make tape of

themselves singing & talking to baby,

telling stories so that they could ‘be with’

her even when they were at home;

encouraged to discuss using photo of

infant. Became able to discuss

disappointment about babies many

problems and anxiety about long-term

effects & involvement with babies

increased.

Psychotherapy as crisis intervention,

supportive and insight-orientated (awareness

that conflicts interfere with optimal parent-

infant relationship

3

Dammers

1982

UK

Case Series To report

parents’

perceptions

of support

group

Neonatal unit Reported discussion Parents reported having increased

knowledge and greater confidence in

caring for their infant

Parents found the support group beneficial in

increasing their knowledge and confidence

3

Isaacs 1980

USA


of newborn

Intensive

Care

Coordinator

Home

40 families of

high-risk

infants

discharged

from NICU

Questionnaire Home visits for

teaching, guidance

and support

More than 2/3 parents felt concerned

about infant discharge and had anxiety

about caring for infant at home. All

families strongly agreed that the

coordinator made families feel

completely comfortable, they had

complete trust in her, she was available,

she gave emotional support, felt they

could discuss fear & worries with her,

and helped them mother infant. Teaching

gave support, confidence & necessary

skills.

Coordinator met the needs of parents 3

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Acknowledgements

The study was funded by the Big Lottery Fund, and the collaborating

organisations included the Royal College of Nursing Institute, the National

Childbirth Trust (NCT), the Warwickshire NCT Pre-term Support Group, and

BLISS, the premature baby charity. The Parents of Premature Babies

(POPPY) project was supported by an advisory group whose membership

which consisted of the following people: Charlotte Bennett, Peter Beresford

(Chair), Debbie Bick, Maggie Redshaw, Nicola Crichton, Phillipa Goodger,

Gill Gyte, Merryl Harvey, Yana Richens, Claire Pimm. The searches for this

review were conducted by Paul Miller, Senior Information Specialist, Royal

College of Physicians.

Ethics Approval:




Guarantor: The University of Warwick, Coventry, CV7 4AL is the guarantor

of this study

WHAT IS ALREADY KNOWN ON THIS TOPIC It has long been recognised that family-centred care at the neonatal unit is beneficial not just for the parents of premature infants, but for the infants themselves. While the importance of family centred care is known, neonatal units are unsure which are the most effective familycentred care interventions to support, communicate with, and provide information to these parents

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Competing interest form:

Please answer the following questions

1. Have you in the past five years accepted the following from an organisation that may in any way gain or lose financially from the publication of this paper: _____No_ Reimbursement for attending a symposium? _____No_ A fee for speaking? ____No__ A fee for organising education? ____No__ Funds for research? ____No__ Funds for a member of staff? ____No__ Fees for consulting?

2. Have you in the past five years been employed by an organisation that may in any way gain or lose financially from the publication of this paper? No

3. Do you hold any stocks or shares in an organisation that may in any way gain or lose financially from the publication of this paper? No

4. Have you acted as an expert witness on the subject of your study, review, editorial, or letter? No

5. Do you have any other competing financial interests? If so, please specify. No

Contributorship statement

JB conducted the systematic review, sat on the advisory group and steering group for the study, synthesized the evidence and wrote the drafts of the paper.

SS was the principal investigator of the study, obtaining funding for the study, sat on the advisory group and steering groups for the study, over saw all stages of the study, assisted in the identification and quality assessment of the evidence, and assisted in the writing of the first draft of the paper.

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MN was the fund holder, sat on the advisory group and steering group of the study and commented on the synthesis of the evidence and draft papers.

NJ was the patient representative on this study. She was integral in the development of this project, in the development of the proposal, sat on the advisory group and the steering group, and commented on the synthesis of the data and the drafts of the paper

LT was integral in the development of this project, in the development of the proposal, sat

on the advisory group and the steering group, and commented on the synthesis of the data

and the drafts of the paper

Funding statement


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References

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2. Stjernqvist K. Extremely low birthweight infants. Development, behaviour and impact on the family. Academic dissertation, Department of Applied Psychology, Paediatrics and Child and Youth Psychiatry, University of Lund, Sweden 1992

3. Veddovi M, Kerry DI, Gibson F, Bowen J, Stante D. The relationship between depressive symptoms following premature birth, mothers’ coping style, and knowledge of infant development. Journal of Reproductive and Infant Psychology 2001, 19 (4): 313-323.

4. Singh D, Newburn M. Becoming a father – Mens’ access to information and support about pregnancy, birth and life with a new baby. London 2000: The National Childbirth Trust

5. Melnyk BM, Feinstein NF, Alpert-Gillis L, Fairbanks E, Crean HF, Sinkin RA, Stone PW,

Small L, Tu X, Gross SJ. Reducing premature infants' length of stay and improving parents' mental health outcomes with the Creating Opportunities for Parent Empowerment (COPE) neonatal intensive care unit program: a randomized, controlled trial. Pediatrics 2006 Nov;118(5):e1414-27

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209x137mm (96 x 96 DPI)

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PRISMA 2009 ChecklistPRISMA 2009 ChecklistPRISMA 2009 ChecklistPRISMA 2009 Checklist

Section/topic # Checklist item Reported on page #

TITLE

Title 1 Identify the report as a systematic review, meta-analysis, or both. 1

ABSTRACT

Structured summary 2 Provide a structured summary including, as applicable: background; objectives; data sources; study eligibility criteria, participants, and interventions; study appraisal and synthesis methods; results; limitations; conclusions and implications of key findings; systematic review registration number.

2,3,4,5

INTRODUCTION

Rationale 3 Describe the rationale for the review in the context of what is already known. 6

Objectives 4 Provide an explicit statement of questions being addressed with reference to participants, interventions, comparisons, outcomes, and study design (PICOS).

6

METHODS

Protocol and registration 5 Indicate if a review protocol exists, if and where it can be accessed (e.g., Web address), and, if available, provide registration information including registration number.

www.poppy-project.org.uk

Eligibility criteria 6 Specify study characteristics (e.g., PICOS, length of follow-up) and report characteristics (e.g., years considered,

language, publication status) used as criteria for eligibility, giving rationale. 7

Information sources 7 Describe all information sources (e.g., databases with dates of coverage, contact with study authors to identify additional studies) in the search and date last searched.

7

Search 8 Present full electronic search strategy for at least one database, including any limits used, such that it could be repeated.

Appendix 1

Study selection 9 State the process for selecting studies (i.e., screening, eligibility, included in systematic review, and, if applicable, included in the meta-analysis).

7

Data collection process 10 Describe method of data extraction from reports (e.g., piloted forms, independently, in duplicate) and any processes for obtaining and confirming data from investigators.

7

Data items 11 List and define all variables for which data were sought (e.g., PICOS, funding sources) and any assumptions and simplifications made.

7

Risk of bias in individual studies

12 Describe methods used for assessing risk of bias of individual studies (including specification of whether this was done at the study or outcome level), and how this information is to be used in any data synthesis.

N/A Few quantitative studies

Summary measures 13 State the principal summary measures (e.g., risk ratio, difference in means). N/A Few quantitative

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studies

Synthesis of results 14 Describe the methods of handling data and combining results of studies, if done, including measures of consistency (e.g., I

2) for each meta-analysis.

7

Page 1 of 2


Risk of bias across studies 15 Specify any assessment of risk of bias that may affect the cumulative evidence (e.g., publication bias, selective reporting within studies).

Additional analyses 16 Describe methods of additional analyses (e.g., sensitivity or subgroup analyses, meta-regression), if done, indicating which were pre-specified.

Few quantitative studies

RESULTS

Study selection 17 Give numbers of studies screened, assessed for eligibility, and included in the review, with reasons for exclusions at each stage, ideally with a flow diagram.

8

Study characteristics 18 For each study, present characteristics for which data were extracted (e.g., study size, PICOS, follow-up period) and provide the citations.

Table 1

Risk of bias within studies 19 Present data on risk of bias of each study and, if available, any outcome level assessment (see item 12). Discussed in limitations

Results of individual studies 20 For all outcomes considered (benefits or harms), present, for each study: (a) simple summary data for each intervention group (b) effect estimates and confidence intervals, ideally with a forest plot.

18-31

Synthesis of results 21 Present results of each meta-analysis done, including confidence intervals and measures of consistency. N/A Non-quantitative analysis performed

Risk of bias across studies 22 Present results of any assessment of risk of bias across studies (see Item 15). N/A

Additional analysis 23 Give results of additional analyses, if done (e.g., sensitivity or subgroup analyses, meta-regression [see Item 16]). N/A

DISCUSSION

Summary of evidence 24 Summarize the main findings including the strength of evidence for each main outcome; consider their relevance to key groups (e.g., healthcare providers, users, and policy makers).

30-32

Limitations 25 Discuss limitations at study and outcome level (e.g., risk of bias), and at review-level (e.g., incomplete retrieval of identified research, reporting bias).

31

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Conclusions 26 Provide a general interpretation of the results in the context of other evidence, and implications for future research. 32

FUNDING

Funding 27 Describe sources of funding for the systematic review and other support (e.g., supply of data); role of funders for the systematic review.

Big Lottery

From: Moher D, Liberati A, Tetzlaff J, Altman DG, The PRISMA Group (2009). Preferred Reporting Items for Systematic Reviews and Meta-Analyses: The PRISMA Statement. PLoS Med 6(6): e1000097. doi:10.1371/journal.pmed1000097

For more information, visit: www.prisma-statement.org.

Page 2 of 2

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A systematic mapping review of effective interventions for

communicating with, supporting and providing information to parents of pre-term infants

Journal: BMJ Open

Manuscript ID: BMJ Open-2010-000023.R2



19-Apr-2011

Complete List of Authors: Brett, Jo; Warwick University Staniszewska, Sophie

Newburn, Mary; Warwick University Jones, Nicola; Warwickshire NCT Pre-term Support Group Taylor, Lesley; National Childbirth Trust




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A systematic mapping review of effective interventions for

communicating with, supporting and providing

information to parents of pre-term infants


* Royal College of Nursing Research Institute,



Tel: 024761 50622

[email protected]

POPPY website: http://www.poppy-project.org.uk/

[email protected]

** National Childbirth Trust


W3 6NH

Tel: 0844 243 6000

[email protected]

[email protected]


No fixed address

[email protected]

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Abstract



support and engage parents in the care of their infant may improve outcomes for

both the parents and the infant. The objective of this systematic review is to identify

and map out effective interventions for communication with, supporting and

providing information for parents of pre-term infants.



HELMIS. Hand-searching of reference lists and journals was conducted. Studies

were included if they provided parent-reported outcomes of interventions relating to

information, communication, and/or support for parents of pre-term infants prior to

the birth, during care at the NICU, and after going home with their pre-term infant.

Titles and abstracts were read for relevance and papers judged to meet inclusion

criteria were included. Papers were data extracted, quality assessed and a narrative

summary was conducted in line with the York Centre for Reviews and Dissemination

guidelines.

Studies reviewed: 72 papers identified, 19 papers were randomised

controlled trials, 16 were cohort or quasi-experimental studies, 37 were non-

intervention studies.

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Results: Interventions for supporting, communicating with, and providing

information to parents that have had a premature infant are reported. Parents report

feeling supported through individualised developmental and behavioural care

programmes, through being taught behavioural assessment scales, and through

breast feeding, kangaroo care and baby massage programmes. Parents also felt

supported through organised support groups and through provision of an

environment where parents can meet and support each other. Parental stress may

be reduced through individual developmental care programmes, through

psychotherapy, through interventions that teach emotional coping skills and active

problem solving, and journal writing.

Evidence reports the importance of preparing parents for the neonatal unit through

the neonatal tour, and the importance of good communication throughout the infant

admission phase and after discharge home. Providing individual web-based

information about the infant, recording doctor-patient consultations, and provision of

an information binder may also improve communication with parents.

The importance of thorough discharge planning throughout the infant’s admission

phase and the importance of home support programmes are also reported.

Conclusion: The paper reports evidence of interventions that help support,

communicate with and inform parents who have had a premature infant throughout

the admission phase of the infant, discharge, and returning home. The level of

evidence reported is mixed, and this should be taken into account when developing

policy. A summary of interventions from the available evidence is reported.

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Article focus:

A systematic mapping review to identify and synthesize evidence of effective


parents of pre-term infants.

Key messages:

• The review highlights the importance of encouraging and involving parents in

the care of their pre-term infant at the neonatal unit to enhance their ability to cope

with and improve their confidence in caring for the infant, which may also lead to

improved infant outcomes and reduced length of stay at the neonatal unit.

• Interventions for supporting parents included: 1) involving parents in

individualised developmental and behavioural care programmes (e.g. COPE,

NIDCAP, MITP) and behavioural assessment programmes; 2) breastfeeding,

kangaroo care and infant massage programmes; 3) support forums for parents; 4)

interventions to alleviate parental stress; 5) preparation of parents for various

stages, for example seeing their infant for the first time, preparing to go home; 6)

home support programmes.


professionals is important, with various modes of providing this information reported,

for example ward rounds with doctors, discussion around infant notes, websites,

and hard copy information.

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Strengths

This is the first review to synthesize the evidence of interventions to support parents

of pre-term infants through improved provision of information, improved

communications between parents and health professionals and alleviation of stress

at all stages of a parents journey through the neonatal unit. It highlights relatively

inexpensive interventions that can be integrated into their pathway through the

neonatal unit and going home, enhancing parental coping, and potentially improving

infant outcomes and reducing the infants length of stay at the neonatal unit.

Limitations

The quality of the evidence that this review reports is variable, and includes all

types of study designs. It has been difficult to evaluate one piece of evidence

over another because of the nature of the evidence. For example, whether

RCTs are an appropriate method of evaluating the parents’ experiences of

interventions over and above, say, a qualitative study is debatable. While the

RCT studies are more objective, they often fail to provide a more indepth

empirical reality of parents’ experiences of having a premature infant. A well

conducted RCT may not provide a true reflection of improved self-esteem or

empowerment, for example. Whereas a qualitative study, provides an

understanding of the experiences. Furthermore, evaluation of such complex

interventions is challenging because of the various interconnecting parts of

the pathway reported in figure 2.

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It is therefore very difficult to evaluate the results to say that one study

method is better than another. For this reason we have been inclusive in our

selection of studies, resulting in a large number of studies selected for the

review. Being inclusive of studies benefits the evidence base by bringing

together ‘experience’ studies in a systematic way gaining a greater breadth of

perspectives and a deeper understanding of issues from the point of view of

those targeted by the interventions. However, if studies were fatally flawed

they were excluded from the review.

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Introduction

While medical advances mean that very premature neonates have an

increasingly better chance of survival, the impact of this experience on the

child and their parents cannot be underestimated. The birth of a pre-term

infant can be an intensely stressful, confusing and difficult time for parents

and families(1). Parents can have feelings of fear about their infant's condition

or doubt in their ability to care for the child. Parents may also experience

anger or grief, or they may blame themselves and experience intense guilt.

Once mothers have returned home, hospital visits to see their baby can be

difficult if coping with other siblings and travelling long distances to the

neonatal unit(2). It is therefore not surprising that mothers of pre-term babies

experience significantly higher levels of post-natal depression than mothers of

healthy full-term infants(3). Fathers, who are often the main source of comfort

and support for their wives, report feeling powerless to help, and often feel

isolated from their infant as the health professionals focus on the infant and

mother(4).

Furthermore, while going home with their infant can be a time of joy and relief

for these parents, bringing home a fragile infant and caring for them on your

own for the first time can be a worrying time, causing additional stress for the

parents.

Reducing parent stress and introducing interventions to improve parents

confidence and ability to care for their premature infant at the neonatal unit and after

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returning home can improve outcomes for parents and their child, reduce the length

of stay at the neonatal unit(5,6) and reduce the re-admittance to hospital(7).


understanding of the experiences of a range of parents with pre-term babies,

particularly with regards to the communication, information and support they

received on the NICU, ensuring that the perspectives of parents are at the heart of

the study(8). This paper reports the results of the first phase of the POPPY study,

which takes the form of a systematic mapping review to identify effective


parents of pre-term babies.

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Methods

Systematic searches were undertaken for the period of January 1980 to

October 2006 in the following databases: Medline, Embase, PsychINFO, the

Cochrane library, CINHAL, MIDIRS, HMIC, and HELMIS (see table 1 for search

strategy). A combination of text terms and MeSH terms were used to maximise the

volume of literature retrieved. Grey literature was sought from specialists in the field,

and the following journals were hand-searched from 1990 onwards for all relevant

English language articles: Neonatal Network Journal, Journal of Neonatal Nursing

and Journal of Obstetric, Gynecologic, and Neonatal Nursing. Update searches


Studies were included if they met the inclusion criteria:

• Outcomes reported by parents who have had a premature infant (i.e.

<36 weeks gestation).

• Provided parent-reported outcomes (i.e. outcomes were reported by

the parent themselves, not reported by health professionals or others)

of interventions relating to information provision at the neonatal unit

and after discharge.


communication with health professionals at the neonatal unit and after

discharge.


provision of support at the neonatal unit and after discharge.

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• Design of study was: RCTs, Quasi experimental, cohort, case-control,

cross-sectional, case series, case reports, or qualitative

• Studies were relevant to that of developed countries

• Passed quality assessment

• Published between January 1980 to October 2009

• English language

Studies were excluded in the met the exclusion criteria

• Reported parent-reported outcomes of parents who had a sick full-term infant

at the neonatal unit.

• Outcomes were not reported by parents (e.g. evaluation of parent

intervention by health professionals)

• Editorials or opinions

• Study was fatally flawed

• Not English Language

• Published before Jan 1980

It was felt that the systematic review should be inclusive of all study designs

as it is often not feasible or appropriate to conduct randomised control trials (RCTs)

or other intervention studies on the outcomes for parents that were measured. It

was deemed therefore that, despite the potential bias inherent in descriptive studies,

the results of these studies nonetheless gave an important insight into parent-

related interventions and should be included in this review.

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The data extraction form and quality assessment for inclusion criteria were based on

the guideline from the NHS Centre for Reviews and Dissemination (NHS CRD) (9)

Initially, two reviewers extracted data (JB, SS) independently for 20% of papers and

disagreements were resolved by discussion with a third reviewer. There was a high

level of agreement between reviewers, so the remaining data was extracted by one

reviewer and checked by a second. Any disagreements were resolved by discussion

with a third reviewer. The quantitative studies covered a wide range of interventions

and different methods of assessment so it was not possible to carry out a meta-

analysis. A non-quantitative synthesis was conducted based on the extracted data.

In the summary figure (Figure 2), the included evidence was assessed using the

Scottish Intercollegiate Guidelines Assessment (SIGN) (10).

Search Results


Seventy two papers were included (four were deemed relevant in two of the

sections). Papers were excluded for a number of reasons including the fact that no

parent outcome was identified, the study was irrelevant to neonatal services offered

in developed countries such as the UK (3), or the study was deemed to be fatally

flawed (11)

Tables 2a to 2j report the data extraction by sections described below in the

results section. Figure 2 below provides a summary of evidence for interventions at

the neonatal unit and after discharge.

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Figure 2: Summary of evidence for interventions at the neonatal unit and after

discharge

Results

Interventions for supporting parents included: 1) individualised developmental

and behavioural care programmes(4,11,12,13,14,15,16,17) (e.g. COPE, NIDCAP, MITP – see

below); 2) behavioural assessment scales; 3) breastfeeding, kangaroo care and

infant massage programmes; 4) support forums for parents; 5) the alleviation of

parental stress; 6) preparing parents for seeing their infant for the first time; 7)

communication and information sharing; 8) discharge planning; and 9) home

support programmes.


care programmes



programmes, of which nine were RCTs. The RCT evidence (1++ & 1+) suggested

that the involvement of parents in an individualised developmental and behavioural

care programme significantly reduced the maternal stress created by the NICU

environment and the demands of their infant (4,11,14,16,18,19). This intervention also

significantly improved the parental understanding of their infant and their

interactions with their infant(4).

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Recent RCT evidence suggested that the introduction of the NIDCAP intervention

had not significantly changed levels of parental stress, confidence or nursing

support. However, the outcomes were measured only 1-2 weeks after the baby was

born (Van der Pal 2007, 1+)(12). The introduction of the NCATS programme in the

NICU made no significant difference to parental stress levels and maternal-infant

interactions when assessed at discharge and at three months after discharge

(Glazebrook et al. 2007, 1+)(20). One RCT found that coaching parents on how to

interact with their pre-term infant made no difference to knowledge of care,

sensitivity to the infant or satisfaction in parenting compared with the control

group(Parker-Loewen 1987, 1-)(21). However, this may have been confounded by the

amount of contact that the control mothers had with the researchers, as these

mothers reported that they enjoyed having someone show an interest in them.


Programme (MITP) significantly improved maternal satisfaction, maternal self-

confidence, and mothers’ perception of their infant’s temperament at six months(15).

One cohort study reported that individualised developmental care programmes

appeared to make no difference to parents’ perceptions of the neonatal unit or

satisfaction with care, despite significantly lowering stress cues in the pre-term

infants(22).


individualised developmental and behavioural care programmes at the neonatal

unit, such as empowering parents to take care of their infants, teaching parents

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behavioural cues of their infants, problem-solving, and learning how to interact with

their infants, resulting in a greater satisfaction with the care provided(13,23,24).

Furthermore, parents reported a reduction in stress after such programmes and said

that they felt more confident in caring for their infants, which promoted parental self-

reliance when returning home(24).


No RCT evidence was reported on this intervention. Three cross-sectional

studies provided insights into how to teach parents assess and interpret the

behaviour of their pre-term through using the Brazelton Behavioual Assessment

scales. The studies reported this intervention may improve mother-infant bonding,

reduce maternal anxiety, and help mothers foster a more realistic perception of their

pre-term infants(25,26,27).

3) Supporting parents through breast feeding, kangaroo care and infant

massage

Four studies reported on parent outcomes of interventions around breast-

feeding, of which one was a RCT, six studies reported on parent outcomes of

interventions around kangaroo care (skin to skin contact with baby out of the

incubator), of which 2 were RCTs, and two studies reported parent outcomes

around baby massage. An RCT (1-) reported no significant difference in the

mother’s confidence and competence in carrying out breast feeding by weighing the

infant before and after feeds(28).

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Three cross-sectional studies and one case series study reported on breast

feeding interventions. The studies reported that parents receiving breastfeeding

support at the neonatal unit were more likely to continue breastfeeding up to a

month after discharge than comparable groups. Breast-feeding education and

support at the neonatal unit in the form of counselling, information (handouts and

videos), practical help and group breast-feeding clinics improved the confidence of

mothers in breast-feeding. An individualised discharge plan for breast feeding

mothers with follow-up telephone calls or home visits appeared to maintain mothers’

confidence in breastfeeding, and provide reassurance(29,30,31)

Six studies reported parent outcomes of using kangaroo care with their pre-

term infants, of which two were RCTs. The RCT evidence (1+) suggests that use of

kangaroo care significantly reduces maternal anxiety around her infant, gives the

mother a significantly greater sense of competence with their infant, and a

significantly greater sensitivity towards her infant32). Furthermore, RCT evidence (1+)

suggests that music during kangaroo care resulted in significantly lower maternal

anxiety (33).

One cohort study, which assessed outcomes of mothers using kangaroo care

at 37 weeks, at 3 months, and at 6 months, reported significantly better levels of

mother-infant interaction, more touch, better adaptation to infant cues, and better

perception of their infant at all time periods. Mothers also reported significantly less

post-natal depression compared to the controls at 37 weeks(34).

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kangaroo method, mainly because their baby was closer to them. Touch was

important to mothers, as it induced feelings of well-being and fulfilment in parents(35).

In the qualitative studies, parents described how kangaroo care helped them

to get to know their infant, increased their confidence, and made them feel that their

infant needed them(36); parents reported that their mood was improved, that they

perceived their infant differently and felt a stronger sense of identifying with their

infant(37).

Two studies reported on parent outcomes of baby massage on pre-term

infants, of which one was an RCT. RCT evidence (1+) reported that at three

months, mothers of massaged infants felt significantly less intrusive towards caring

for their baby, interactions were more reciprocal, and treated infants were more

socially involved compared to controls(38). One cross-sectional study also reported

improved maternal-infant interactions(39).


No RCT evidence was reported for these interventions. Nine studies reported

the benefits of participating in support groups set up within the NICU, either run by

staff at the neonatal unit or by parents who have experienced having a pre-term

infant themselves. Evidence from cohort studies reported that parent-led peer

support groups at the NICU led to mothers in the intervention group having

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significantly less stress at four weeks and 16 weeks after support was initiated at the

neonatal unit(40,41). Mothers of critically ill pre-term infants had significantly better

maternal mood states, maternal-infant relationships, and home environments in the

intervention group compared to the control group(42)

Evidence from a qualitative study gave insights into how a health professional

led support group assisted parents to gain perspective, feel supported, and learn

practical information about how to interact with their baby(43). Qualitative evidence

also reports that parent-to-parent support groups provided parents with information,

emotional support, and strength(44). Cross-sectional studies and case series studies

reported on how health professional led support groups also helped to relieve

anxiety, gave an opportunity to communicate with staff, and gain confidence in their

parenting skills(45,46,47). Another case series study reported how a support programme

run by parents gave parents space to express their worries and concerns and

provided comfort in talking to ‘experienced’ parents(48).


Seven studies report interventions that attempt to alleviate the adverse

psycho-social consequences of having a pre-term infant, of which four were RCTs.

RCT evidence (1+ - 1++) is reported in the individualised developmental behavioural

programme section for the stress reduction benefits of COPE, NIDCAP, and

MITP(4,11,14,16). Other RCT evidence (1-) reports that the use of videotape in

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strategies that focus on coping with emotions and active problem solving

significantly reduced maternal stress (49).


interventions to teach relaxation and coping mechanisms to normalise their

experience, as well as emotional and practical support significantly reduced the

traumatic impact for parents compared to controls(50). Two case series studies gave

insights into the use of journal writing for documenting feelings, thoughts, milestones

and involvement in care; the use of psychotherapy to offer support and insight at a

time of crisis was also found to reduce stress(51,52).


Two studies reported evidence for different ways of preparing parents for

seeing their pre-term infant for the first time, of which one was an RCT(53,54). The RCT

evidence (1+) reported that giving parents a photograph of their pre-term infant

provides a positive effect by improving bonding with their infant(53).

The qualitative study gave an insight into how a tour of the neonatal unit prior

to having a pre-term infant (when a pregnancy at high risk of premature labour was

diagnosed) may decrease parent’s fears, inspire hope in their infant’s prognosis,

and give parents reassurance about the care offered at the NICU(54). However, some

parents found the appearance of the babies and the technology overwhelming, and

some expressed concerns that the tour was not supported by staff on the neonatal

unit.

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Eight studies assessed interventions to improve the issues of communication

at the neonatal unit, of which one was a RCT(55). The RCT evidence (1+) reported

that taping parent-doctor consultations improved the recall of parents of the

consultation(55). The trial found that mothers who received audiotapes of their

consultation recalled significantly more information about the diagnosis, treatment,

and outcome of their children than women in the control group at ten days and at

four months.

Evidence from a cohort study reported that discussions between health

professionals and parents around their infant’s progress chart resulted in the

intervention group having significantly fewer unrealistic concerns, less uncertainty

about the medical condition of the infant, less conflict and a greater satisfaction with

regards to shared decision-making(56). Another cohort study reported that parents

had significantly greater contact with the NICU during the infant’s admission and

reported a sense of relief at seeing their infant when they had access to the

neonatal unit via a videophone(57).

Qualitative evidence investigated the perception of parents regarding the

methods of effective and ineffective communication at the NICU. Parents perceived

that the most effective communication with nurses was through discourse

management (nurses asking questions and encouraging parents to ask questions),

caring and reassuring communication, and communication as equal partners in the

care of the infant. Ineffective communication was perceived as when the

information given was inconsistent, staff did not check if parents understood the

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information, and if questions were not allowed(58). Furthermore, qualitative evidence

reported that ‘chat’ or ‘social talk’ between nurses and parents had a positive

influence on mothers’ confidence, their sense of control, and their feeling of

connection with their baby(59).


communication between parents of pre-term infants and health professionals. The

use of a web-based programme (BabyLink ) to provide individualised information to

parents helped communicate complex issue, and parents reported that it helped to

humanise the experience of the neonatal unit(60). Furthermore, a study reported that

the use of BabyLink improved the overall satisfaction of the family with care at the

neonatal unit and actually reduced the length of stay at the neonatal unit(6). Parents

reported that they found the tape-recorded consultations with doctors helpful to

process the information, as well as being comforting and supportive(61).

Five studies reported evidence on the information needs of parents, none of

which provided RCT level evidence. One pre-test/post-test study concluded that

information and training for specific practical care of their infant on oxygen therapy

could significantly improve the relevant knowledge of parents, and reduced their

distress when entering the transition period of returning home(62).

Three qualitative studies described an information binder that provided

relevant information about medical and practical issues relating to the NICU.

Parents could add information to the folder. The information binder empowered

parents to take an active interest in acquiring relevant information about their infant

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and improved parents understanding and ability to participate in decision-making.

Furthermore, the information binder increased parent’s confidence in caring for their

infant, and gave them hope of progress for their infant(63, 64). Prioritising information

through a “card sort” (cards which state information topics for parents who have had

a pre-term infant) was reported by a qualitative study as being a less intimidating

way for parents to access important and timely information (65). This study reported

that parents’ highest priorities were infant cardiopulmonary resuscitation (CPR),

infant illness and development; information with a moderate priority were feeding,

giving medication, and hygiene; and information topics that were given the lowest

priority included getting help at home and the use of car seats. One cross-sectional

study reported that the neonatal nurses were the best source of information at the

NICU(66).


Six studies reported on discharge programmes, of which one reported RCT

level evidence(67). RCT evidence (1-) suggests that a parent-infant discharge


interactions with their infants, and parents were significantly more engaged with

their infants after returning home compared with the parents who did not go through

a discharge programme(67).

One cohort study assessed an early discharge programme with an

individualised care and discharge plan, followed by domiciliary nursing care, and

reported significantly less anxiety in mothers in the intervention group at

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discharge(68). No significant differences in the experiences of parents with regards to

their infant’s emotional well-being and breast feeding issues were reported. The

levels of anxiety did not appear to be different between groups of parents who did

not receive a formal discharge programme at one year after discharge from the

neonatal unit(68).

The qualitative studies gave insights into how discharge planning provided

support for parents. One study conducted a discharge programme that comprised of

an educational programme during the period of hospitalisation for parents with pre-

term infants, a visit and orientation about the neonatal unit by the family’s health

visitor, a multidisciplinary and cross-sector discharge conference, and the

publication of relevant booklets for parents and health care providers(69). The

parents found that most of the intervention initiatives contributed to a feeling of

overall increased support and met their needs, including improving their confidence

in caring for their pre-term infant and ensuring the well-being of their child following

discharge. Families valued the support and guidance they received from the co-

ordinating health visitor, and valued having a named contact nurse throughout their

stay at the neonatal unit and at home, which demonstrated the importance of

continuity of care. All participants in this study felt secure when they returned home.

One qualitative study assessed the perceptions of parents of pre-term infants

regarding an early discharge and home-care programme(70). The study concluded

that parents of children who were discharged early may feel more positive about

coming home as early as possible from the hospital, as this may help parents to feel

like a ‘normal’ family and not to have to share their infant with the nurses and other

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health professionals on the neonatal unit. However, parents in this study

appreciated the 24 hour accessibility of the staff on the neonatal unit for support and

knowledge.

Two further qualitative studies reports a Care by Parent discharge

programme and describes how the mother can stay in the same room or in a room

close to her pre-term infant, assuming all of the aspects of care but with help at

hand if needed (71,72). Mothers reported that it gave them the opportunity to test

reality and bridge the gap between hospital and home, so gaining confidence in

taking their infant home, and it helped mothers to feel like a proper family, and

promoted their “ownership” of the infant.


Ten studies reported the outcomes of parents who participated in home

intervention programmes, of which two were RCTs. RCT evidence (1-) reported that

home support programmes, where parents are visited and given emotional and

practical support regularly for the first year and for up to three years afterwards, lead

to significantly reduced parental stress levels, a greater positive effect on maternal

behaviour and greater interactions with their pre-term infant. However, the

intervention was not significantly associated with improved maternal coping(73). RCT

evidence also reports that regular home support programmes that last for up to a

year made mothers significantly more responsive to their infant and meant that they

were able to provide more appropriate and varied stimulations for the infant(67).

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Evidence from a cohort study where parents were visited regularly and taught

care-taking skills, games and exercises reported a significantly better home

environment for the family. However, there was no difference found between the

intervention group and the control group with regards to maternal coping(74).

Evidence from a cohort study also assessed the support and psychological impact

of an Infants Apnea Evaluation Programme (IAEP) for infants on home monitors and

reported that monitoring itself significantly reduced anxiety. The structured support

programme was found to be supportive by parents(75). A similar cohort study

introduced a home counselling programme for parents who used home monitoring.

Parents were significantly less stressed by the presence of the monitor and by false

alarms, and reacted less aggressively to monitor alarms. Parents in the structured

support programme used the monitor less, and mainly during sleeping periods(76).

One cohort conducted an educational developmental programme at home twice

monthly using a parent’s voice tape, baby massage, and a passive range of motion

and exercise. The programme resulted in a significant improvement in parent-infant

interaction at six months and 12 months after discharge, as well as benefiting the

infant(77).

Evidence from a cohort study reported that a home healthcare programme

and home visiting programme significantly improved the home environment of the

intervention groups compared to the control groups at one month and 12 months(5).

However, there were no significant differences between groups with regard to family

experiences and parental satisfaction.

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Evidence from one cross-sectional study and two case series studies give

insights into the effect of home support programmes. Specific to the UK, the

community neonatal service (CNS) was valued positively in providing support and

continuity of care for parents who needed a high level of support (e.g. experiencing

depression and bonding struggles with their infant, infant sleeping issues and

feeding problems) (78). One study assessed the impact of an intensive care co-

ordinator who provided home visits for providing teaching, guidance and support to

parents(79). The study reported that the intensive care co-ordinator made families

feel comfortable, offering emotional and practical support, and taught parents the

necessary skills for parenting the pre-term infant. Another similar study assessed a

neonatal integrated home care programme where neonatal nurses taught specific

infant care needs and provided emotional support to parents. Parents reported that

the programme helped them to bring their pre-term infants home earlier, provided


Discussion

The aim of this systematic review focused on identifying interventions that

were effective in supporting, informing and communicating with parents who have

had a pre-term infant. This study has identified a range of interventions that can

produce beneficial outcomes for parents in relation to communication, information

and support.

RCT evidence reports that developmental and behavioural care

programmes such as COPE and MITP significantly reduce stress and

depression in mothers of premature infants, significantly increase mothers’

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knowledge of her infant’s condition and care (COPE) and significantly

improved mothers attitude and confidence in caring for their infant (MITP).

COPE and MITP performed better than other such programmes because they

were developed to improve both mother and infant outcomes, whereas other

developmental programmes focussed more on infant outcomes. Such

interactive learning programmes appear to be more successful at reducing

mother’s stress and improving mother’s knowledge than stand alone coaching

sessions for parents.

Other RCT evidence reported that skin to skin care and baby massage

significantly improved the mother-infant interaction and increased the

mother’s sense of competence in handling their infant. These are inexpensive

interventions that can be introduced relatively easily to most NICUs.

Perhaps more controversial RCT evidence reports that recording parent’s

consultations with their doctors significantly improved the parent’s recall of

diagnosis, treatment and outcomes of their infant. However, in our growing

litigious society, doctors may be reluctant to do this.

Cohort evidence reports the benefits of several interventions including

discussions around the infant progress chart, parent support groups at the

neonatal unit and home support programmes once the infant has been

discharged. The non-intervention studies further added to the review by bring

a wider breadth of information around the beneficial experiences of

developmental care programmes, educational interventions, preparation for

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visiting the neonatal unit, and interventions to reduce parent’s stress, that

might not have been reported within an RCT design.

Important messages have come through this research, which healthcare

professionals and neonatal units should consider. Some neonatal units may have

already utilised some of these interventions, but we would urge them to use the

results of this systematic review to re-evaluate current practice around parents of

premature infants and consider whether unit and professional practice requires

adaptation or change. Changing practice can be difficult and a number of key

elements are required, including evidence, an understanding of the context of care

and a way of facilitating this evidence into practice(81). We also acknowledge that

part of the context is a complex range of workforce issues that limits what neonatal

units can achieve, despite their best efforts. The focus on developing patient-

centred care within the NHS in the UK also applies to neonatal units and should


Many of the interventions that have been identified in this study could be

described as being building blocks for a family-centred model of care in the UK

setting, which embraces the mother and father or significant others in the medical

care of their infant. Such interventions act through establishing key actions and

interventions that emphasise the importance of communicating with, supporting and

informing the family. Furthermore, our review demonstrated that such family-centred

interventions resulted in shorter stays at the neonatal units, less re-hospitalisation of

pre-term infants and better long-term outcome with regards to morbidity in this group

of infants(4). This contributes to a strong argument that highlights the potential for

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family-centred care to be made more cost-effective, more acceptable to parents,

and in some cases offer important clinical benefits.

The scope of this review was very broad, and the searches were

therefore developed to be inclusive. This resulted in the search being

sensitive, but not specific. Furthermore, this systematic review includes

intervention studies and non-intervention studies. It is implicit that the non-

interventional studies will bring bias to the evidence base. We have therefore

stratified the summary of results into RCTs and non RCTs, with the non-RCTs

being stratified further within observational designs by study design (ie.,

cohort, case-control, cross-sectional, etc). It was important to include the non-

interventional studies as much of the literature around parents’ views and

experiences does not lend itself to the RCT design. Being inclusive of studies

benefits the evidence base by bringing together ‘experience’ studies in a

systematic way gaining a greater breadth of perspectives and a deeper

understanding of issues from the point of view of those targeted by the

interventions.

The Scottish intercollegiate group network (SIGN) grading system used in

this review is intended to place greater weight on the quality of evidence, and to

emphasise that the body of evidence should be considered as a whole, and not rely

on a single study. It is also intended to allow more weight to be given to

recommendations supported by the good quality observational studies where RCTs

are not available for practical or ethical reasons, as shown in figure 4.

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The majority of studies included in this review are from the USA, which may

affect the generalisation of interventions in neonatal units today and the ability of

such studies to be applied in a UK practice setting would need to be considered.

While this review identified a range of interventions that can help parents, certain

groups were under-represented in the study samples, including amongst others

minority ethnic groups, individuals from lower social classes and young parents.

Further good quality research within a UK setting, and research on under-

represented groups of parents at the neonatal units is needed.


interventions for providing improved support, information and communication to

parents of a pre-term infant. These interventions are summarised in Figure 2.

Figure 4: Scottish Intercollegiate Guideline Network (SIGN) Levels of Evidence

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Acknowledgements

The study was funded by the Big Lottery Fund, and the collaborating

organisations included the Royal College of Nursing Institute, the National

Childbirth Trust (NCT), the Warwickshire NCT Pre-term Support Group, and

BLISS, the premature baby charity. The Parents of Premature Babies

(POPPY) project was supported by an advisory group whose membership

which consisted of the following people: Charlotte Bennett, Peter Beresford

(Chair), Debbie Bick, Maggie Redshaw, Nicola Crichton, Phillipa Goodger,

Gill Gyte, Merryl Harvey, Yana Richens, Claire Pimm. The searches for this

review were conducted by Paul Miller, Senior Information Specialist, Royal

College of Physicians.

Ethics Approval:




Guarantor: The University of Warwick, Coventry, CV7 4AL is the guarantor

of this study

WHAT IS ALREADY KNOWN ON THIS TOPIC It has long been recognised that family-centred care at the neonatal unit is beneficial not just for the parents of premature infants, but for the infants themselves. While the importance of family centred care is known, neonatal units are unsure which are the most effective family- centred care interventions to support, communicate with, and provide information to these parents

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Contributors statement

JB made substantial contributions to the design, acquisition of data and analysis and interpretation of the data, and wrote the first draft of the paper. JB wrote the first amendments to the draft paper and the first draft of responses to the reviewers

SS was the principal investigator of the POPPY study, obtaining funding for the study, made substantial contributions to the conception and design of the study, assisting in the selection of papers and the quality assessment of papers, assisted with the interpretation of the data, assisted in the writing of the first draft of the paper, and approved the version for publication

MN was the fund holder, made substantial contributions to the conception and design of the study, assisted in the interpretation of the data, revised drafts of the paper, and approved the version for publication

NJ was the patient representative on this study, made substantial contributions to the conception and design of the study, assisted in the interpretation of the data, revised drafts of the paper, and approved the version for publication

LT was a representative of the National Childbirth Trust and a patient representative. She made substantial contributions to the conception and design of the study, assisted in the interpretation of the data, revised drafts of the paper, and approved the version for publication.

Funding statement


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2a) Supporting parents through individualised developmental and behavioural care programmes

Author

(Year)

Country

Study

design


measure

No of cases No. of

controls


Quality

(SIGN)

Van der Pal

2007 Netherlands

RCT NIDCAP PSI

Parents of Mother and

Baby Scale

Nurse Parent Support Tool

94 84 No significant differences were reported in Parental Stress

Index, Confidence of parents, or perceived nursing support at 1 to 2 weeks after birth

1+

Glazebrook

et al

2007 UK

RCT Nursing Child Assessment Teaching Scale

(NCATS) at neonatal unit, with optional follow-

up

Parental Stress

Index (PSI)

Home Observation

for

Measurement of the

Environment

(HOME)

99 111 No significant differences reported at discharge or at 3

months after discharge.

1+

Kaaresen

2006

RCT Mother-Infant Transaction Program

The intervention consisted of 8 sessions shortly before discharge and 4 home visits by specially

trained nurses focusing on the infant’s unique

characteristics, temperament, and developmental potential and the interaction between the infant

and the parents.

PSI 71 69

preterm 75 term

Early-intervention program reduces parenting stress in both

mothers and fathers during the first year after a preterm birth to a level comparable to their term peers

Mothers 6 mths - total stress: 16.9 (5.2 to 28.5) .005 Mothers 12mths – total stress: 13.7 (1.6 to 25.9) .03


1+

Byers 2006

USA

Cohort Family-centred care/developmental supportive care


study to measure

parents

perceptions and

satisfaction.

57 57 No differences in parent perception or satisfaction with the neonatal unit

2-

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40

Study mainly reports baby

outcomes

Browne 2005

USA

RCT Family based intervention (Gp1: demonstration of pre-term baby behavioural cues; Gp2:viewed

educational video and books about pre-term

babies

Nursing Child Assessment

Scale

(NCAFS) and Knowledge of

Preterm Infant

Behavior Scale (KPIB)

Gp1: 28 Gp2: 31

25 Intervention group reported significantly greater sensitive interactions with pre-term babies, and significantly greater

knowledge of pre-term babies than controls at 1 month after

discharge

(NCAFS 45.65, 6.20vs. 47.43, 7.36 vs. 48.88, 7.41, p<0.05;

mean KPIB 23.32, SD 5.88 in group 1 vs. 25.90, 5.30, in group 2 vs. 19.58, 5.01 in group 3, p<0.001)

1+

Als

2003

USA



PSI (Parental

Stress Index)



Hospital 1: I= 35.7 (sd 21.3)

C=44.9 (sd34.2)

Hospital 2: I=55.8 (sd28.8) C=65.2 (sd27.5)


C=55.9 (sd22.5) Group score ® = .41, p<.001


1++

Meyer 1994

USA

RCT Family based intervention (Psychological

intervention for family, teaching care and

behavioural cues of baby, home discharge plan)

Parental

Stressor scale

(PSS) Maternal self

esteem

Inventory, Beck

Depression

Scale (BDS), Family

Environment

Scale

34 34 Intervention group reported significantly less stress (PSS)

and reported significantly less depression (BDS) at

discharge.

BDI: Int: 11% vs. 44%, p<0.05; 39% vs 31% NS.

PSS: Int:2.4 ± 1.0; 2.0 ± 0.8 vs Con 2.4 ± 0.9; 2.6 ± 0.8 p<0.05


1+

Rauh 1990

USA

Cohort Vermont Mother-Infant Transaction Programme (teach parents to appreciate infants unique

characteristics. teach behavioural cues, teach parents to respond to infant, enhance mothers

enjoyment of baby).

Maternal Role Satisfaction

questionnaire Self-

Confidence

rating

40 41 At 6 months: significantly better intervention effects for maternal role satisfaction, self-confidence and perception of

infant temperament in intervention group; no difference on maternal attitudes to child-rearing. Data not given in paper.

2-

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41


Parker-Loewen

1987

Canada

RCT 8 X 40 minute interaction coaching to encourage sensitive responding by mothers

Satisfaction with Parenting

Scale

Knowledge of Infant

Development

Scale Life

experiences survey

Interaction

rating scale

35 35 No significant difference between treatment and control group on interaction or knowledge of infant development or

satisfaction with parenting

1-

Nurcombe 1984

USA

RCT Behavioural Assessment Scale: Mother-Infant Transaction Programme (MITP)

Hereford Parent

Attitude

Survey Seashore Self

Confidence

Rating Paired Comparison

Questionn-aire

37 36

Intervention group scored better on maternal adaptation (role satisfaction, attitudes to child-rearing, self confidence)

than low birth weight controls (F(3, 87), p<0.030.

Univariate analysis: Maternal satisfaction F (2,89), 4.55, p<0.013




weight group (F [3,87], 3.27, p=0.025).

1+

Author

(Year)

Country

Study

design

Objective Setting Study design/ outcome

measures


Conclusions

Sign

Wielenga 2006,

Netherlands

Qualitative Evaluation of NIDCAP

NICU NICU-Parent Satisfaction Form and the Nurse Parent

Support Tool

NIDCAP Parents were significantly more satisfied with care given according to NIDCAP

principles than they were with the

traditional care for their premature born babies.

3

Lawhorn 2002 USA

Case series To report on a facilitating

parent

assessment of infant

behaviour

NICU Convenience

sample of 10

infants (≤1500g, ≤32

weeks,

Videotaped parent-infant interactions

An individualised nursing

intervention based

on assumptions of parent and infant

competence;

The intervention enhanced the parents’ ability to appraise the infant’s behaviour

and respond in a supportive manner (data

not presented). Parents found it helpful in getting to know their infant and being

more empowered in the infant’s care.

NICU staff should support parents in gaining greater understanding of infant and sensitive

interactions; parents need to be active

collaborators in infant care

3

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42

and supportive

responses

appropriate for gestational

age, no

congenital abnormality) +

18 parents

discussion of videotaped

interactions to

discuss infant cues and promote

supportive

responses

2b) Supporting parents through use of Behavioural Assessment Scales

Author

(Year)

Country

Study

design


measures


Conclusions

Sign

Hawthorne

2005 UK

Cross-

sectional

To evaluate

Neonatal Behavioural

Assessment

Scale (NBAS) to

support

parent-infant relationship.

Neonatal unit

22 parents of premature

infants

22 Questionnaire developed

for study

Behavioural

assessment scale

Parents reported: NBAS helped parents

adjust to baby’s behaviours, increased parents confidence in caring for their

baby, satisfied their information needs

about their baby.

NBAS can improve parents knowledge and

improve their confidence in caring for their infant.

3

Culp 1989

USA

Cohort Demonstra-

ting

assessment of Premature

Infant

Behavior (APIB)

NICU

14 couples +

premature infants (<32

weeks)

Alternate allocation to

demonstra-tion of assessment

(2 weeks before assessment of outcome) or not until

afterwards

STAI

Neonatal Perception

Inventorry

Demonstrating

assessment of

Premature Infant Behavior (APIB)

Intervention fathers reported lower

anxiety than non-intervention fathers

(p<0.05).Both mothers and fathers in intervention group had more realistic

perception of newborns (p<0.04).

Intervention mothers more aware of newborn’s abilities to shut out disturbing

stimulation on repeated exposure

(p<0.02)

Intervention appeared to reduce paternal

anxiety and fostered more realistic

perceptions of the premature infant

3

Szajnberg 1987, USA

Qualitative (within

cohort for

infant outcomes)

Evaluation of Brazelton

Newborn

Behavioural Assessment

Scale

(BNBAS)

Home Structured interview BNBAS At 6 months, mothers in the intervention group remembered more details from the

BNBAS than control mothers did of the

standard physical examinations. Intervention mothers tried more exam

items at home and found more of the

items helpful. There was a trend for mothers to visit their infants more often

after the intervention.

3

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43

2c) Supporting parents through breast feeding, kangaroo care and infant massage

Author

(Year)

Country

Study

design


measure

No of cases No. of

controls


Quality

(SIGN)

Lai

2006 Taiwan

RCT Effects of kangaroo care combined with music State-Trait

Anxiety Inventory

(STAI)

15 15 Music during KC also resulted in significantly lower

maternal anxiety in the treatment group on day 3 of the interention (t (19.6) =−2.14, p<.05). Maternal state anxiety

improved daily, indicating a cumulative dose effect

(F(1.49,40.39)=5.81, p<.01). Anxiety levels in the control remained unchanged

1+

Ferber

2004 Israel

RCT Baby massage:

I= to receive 15 massages 3 times per day for 5 days.


Gp2: Researchers conduct massage Gp 3 controls

Coding

Interactive Behaviour

Assessment

for newborn

Gp 1: 18

Gp 2: 18

19 Significant results report that at 3 months, mothers of

massaged infants were less intrusive, and interactions were more reciprocal.


Maternal Intrusiveness(MI)-1.97+0.91 Gp2: DR – 2.46+0.99

MI – 1.68+0.63

Gp3: DR – 1.66+0.68 MI – 2.54+1.01

DR: F=4.69,p<0.01

MI: F=4.05,p<0.02

No significant difference in maternal sensitivity was

reported.

1+

Feldman

2002 Israel

Cohort Effects of Kangaroo care Mother-Infant

interaction scale

Maternal

depression Mothers

perceptions

HOME

73 73 At 37 weeks gestational age: After kangaroo care,

interactions more positive, mothers showed more positive affect, touch, adaptation to infant cues, infants more

alertness and less gaze aversion, mothers less depressed &

viewed infants as less abnormal. Less maternal depression [KC mean 6.68 (5.55) vs control 9.05 (4.27), F=5.68,

p<0.05].

At 3 months corrected age: mothers and fathers of kangaroo

care infants more sensitive and provided better home

environment.

2+

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http://0-www.sciencedirect.com.pugwash.lib.warwick.ac.uk:80/science?_ob=MathURL&_method=retrieve&_udi=B6T7T-4GJK8FY-1&_mathId=mml20&_user=585204&_cdi=5067&_rdoc=3&_acct=C000029838&_version=1&_userid=585204&md5=3810bd263b9d96c0822ca055948fa424

http://0-www.sciencedirect.com.pugwash.lib.warwick.ac.uk:80/science?_ob=MathURL&_method=retrieve&_udi=B6T7T-4GJK8FY-1&_mathId=mml21&_user=585204&_cdi=5067&_rdoc=3&_acct=C000029838&_version=1&_userid=585204&md5=52e0d9a7d3ef42d83248dac847814000


44

KC Mothers provided a better home environment Manova at

3 months – HOME: Wilks F (df=7,123), 2.99, p<0.01. KC

fathers provided a better home environment – HOME: Wilks F (df=7,110), 2.45, p<0.05.

At 6 months corrected age: kangaroo care mothers more sensitive (maternal sensitivity: KC mean 4.20 (0.64) vs

control mean 3.86 (0.76, univariate 5.36, p<0.05) & infants

scored higher on Bayley Mental Development Index (96.39 vs. 91.81, p<0.01) and Psychomotor Development Index

(85.47 vs. 80.53, p<0.05)

Hall 2002

Canada



Parental sense

of competence

scale Maternal

confidence

questionnaire Influence of

specific

referents scale

30 30 No significant differences in maternal confidence or

competence between weighed or not-weighed infants

1-

Tessier

1998

Columbia

RCT Effects of Kangaroo care Mothers

perception of

premature babies

questionnaire

246 246 Kangaroo care significantly increased mother’s sense of

competence in mothering their baby (F(1481) 10.36, P

.001), and was significantly increased maternal sensitivity to their baby at the neonatal unit. ( F(1481) 3.71, P .05).

This improved perception of their baby effect is related to a

subjective “bonding effect” that may be understood readily by the empowering nature of the

KMC intervention. The study also reported a negative effect

on the feelings of received support from health professionals of mothers practicing KMC (F 5.03, P .03).

Kangaroo care significantly reduced length of stay especially in lighter babies.

Two-way analysis of variance stratifying by birth weight

showed that the savings in hospital stays were clearly related to weight at birth: an interaction effect ( F(3480) 4.06, P

.01) shows that the maximum saving in the KMC group was observed in infants weighing 1501 g (4.5 to 6.7 days),

whereas in infants weighing 1500g, the length of hospital

stay was virtually identical in both groups

1+

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Author

(Year)

Country

Study

design


measures


Conclusions

Sign

White 2000

USA


feeding support by

occupation-

nal therapists (OTs)

NICU

9 parents of premature

infants

receiving OT services for

feeding issues

Interview

questionnaire

OTs involved in

parent education in NICU (e.g.

oral-facial

stimulation, positioning, oral

support techniques, typical

feeding

development) using

demonstration,

discussion, hands-on training,

handouts, videos

etc.

Parents reported receiving education

about oral-facial stimulation and oral support techniques (9/9 reported),

positioning, typical feeding development

(8/9 reported); hands-on training and demonstration reported most frequently.

Overall, parents felt ‘confident’ or ‘very confident’ in their ability to understand

topics. 5/9 indicated they thought they

would not need additional help after discharge; 3/9 felt they would; 1 unsure.

Parents perceived OTs were providing

effective education & support in infant feeding techniques

3

Elliott 1998

Canada


telephone

follow up programme

to support

breast-feeding

Home

20 mothers

Structured interview Telephone call

with structured

questions to complete form

(e.g. feeding

patterns, any problems, plan to

address problems,

any referrals needed)

All mothers reported finding telephone

call helpful and increasing their

confidence in continuing to breast feed.

Telephone support can help mothers

breastfeed premature infants at home

3

Legault 1995

Canada

Cross-sectional

Effects of kangaroo

(skin to skin)

care

NICU 61 mother-

infant dyads

experiencing both

traditional and

kangaroo-type transfers from

incubator

Satisfaction questionnaire

Maternal Satisfaction

Question-naire

Kangaroo (skin to skin) care

Kangaroo method was preferred by 73.8% of mothers, mainly because the

infant was closer to them and they could

touch them more easily.

Kangaroo method encourages early contact with infant& induces feelings of wellbeing &

fulfilment in parents

3

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Remedios 2005, USA

Qualitative To evaluate the effect of

baby

massage on the parents

of premature

infants

Neonatal unit Semi-structured interviews Baby message Parents reported feeling ‘closer’ to their infants, and reported improved


Parents felt the baby massage was beneficial to the infant and themselves.

For the parents of a premature baby, baby massage can help improve the sense of

closeness to their infant and improve their


3

Meier 1993 USA

Cross-sectional

Breast feeding

support

NICU 132 parents of

premature

infants

Survey Breast feeding intervention

record

Mothers more likely to be breast feeding than comparable populations

Breast feeding support encourages mothers in the NICU to breast feed and to continue to

breast feed for longer.

3

Affonso

1993, USA

Qaulitative Evaluation

of

Skin to skin care (SSC)

for

premature infants

NICU

Mothers

Interview Kangaroo care SSC provided a way for mothers to know

their infants, to develop strong positive

feelings towards them, and to reconcile their feelings about having a premature

birth, so that emotional healing could

take place.

Kangaroo care improved mother-infant

interactions.

3

Gale 1993 USA

Case series Effects of kangaroo

(skin to skin)

care

NICU 25 intubated

infants and

their parents

Interviews Kangaroo (skin to skin) care

Parents described kangaroo care as beneficial, giving stronger identity with

and knowledge of infant; greater

confidence in infant’s need for them and their ability to need these needs; greater

confidence in asking questions

Nurses can support parental attachment by supporting kangaroo holding

3

2d) Support Forums for Parents:

Author

(Year)

Country

Study

design


measure

No of cases No. of

controls


Quality

(SIGN)

Preyde

2003 Canada

Cohort

Parent to Parent Peer Support Parental

Stressor scale (x)

Sate-Trait

Anxiety Scale (Spielberger)

32 28 Intervention group better scores on all measures at 4 or 16

weeks (groups were equivalent at baseline), e.g. mean PSS score 1.54 (1.3-1.7) in intervention group at 4 weeks vs.

2.93 (2.7-3.1) in controls, p<0.001

At 4 weeks mean PSS score was significantly less in the

intervention group – 1.54 (1.3-1.7) vs 2.93 (2.7-3.1), p<0.001.

At 16 weeks mean anxiety score, mean depression score,

and perceived support were significantly less in the intervention group: anxiety - 31.4 (27.2-35.4) vs 38.6 (34.6-

42.7), p<0.05; depression - 2.20 (0.89-3.60) vs 4.88 (3.51-

2++

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47

6.17), p<0.01; perceived support – 6.49 (6.02-6.82) vs 5.48 (5.09-5.94), p<0.01.

There were no different in trait anxiety between the groups

at any time period.

Lindsay

1993

USA

Cohort Parent to Parent Peer support for parents with

critically ill pre-term babies.

Parent report NR NR Numerical data not reported in paper

Reported benefit to parents: emotional support +

Information support

2-

Author

(Year)

Country

Study

design


measures


Conclusions

Sign

Buarque,

2006

Qualitative To

investigate

the influence of support

groups on

the family of risk newborn

infants and

on neonatal unit workers.

Neonatal unit

13 mothers,

six fathers, two

grandmothers

and 16 healthcare

workers

Semi-structured interviews None The analysis revealed that the support

group to the family of risk newborns

provided parents and family members with information, emotional support and

strengthening so that they could come to

terms with the birth of their child and his/her admission to the neonatal unit, in

addition to enabling parents to take care

of the newborn infant. There was interpersonal growth in the interaction

between parents, family members, and

healthcare workers.

The support group to the family of risk

newborns uses an approach that is based on

family-centered care. These principles allow restoring parental competence, helping

healthcare workers to respect values

and feelings of family members, and establishing a collaborative work between

parents and healthcare workers in

the neonatal unit.

3

Hurst et al,

2006

Qualitative To identify

parents'

utilization and

evaluation of

a support program

based in a

newborn intensive

care unit

(NICU)

NICU

477 parents

utilised support

service, 48

completed survey

Program records and a survey

developed by the author

documented parental use and evaluation of services. Data

analysis consisted of

descriptive statistics and qualitative content analysis

Support

programme that

offered a combination of

formats for

support services: group support,

one-to-one

support, and telephone support

78% utilized 1 support service format

exclusively. Eighteen percent utilized 2

support formats concurrently. A subsample of 48 parents completed an

evaluation survey. Group support

offered more opportunities for families to problem-solve communication issues

with nursery personnel and provide

information that assisted parents' involvement in their babies' care.

Utilising more than one support format

provided greater support for parents.

Parent support programs that utilize only one

type of format may not be optimal for

providing the range of support needed by many NICU families. Parent support

programs offer an important mechanism to

assess provider approaches to facilitate family-centered care.

3

Pearson

2001 USA


programme to promote

positive

parenting in NICU

NICU (level

III and special care (level II)

nurseries

104 parents (59 mothers +

Interviews Parent’s Circle:

90-minute information

session + support

to parents as they cope with early

Parents learned that they: could still

parent even when baby is in hospital; could receive support from people going

through similar experiences. They

helped normalise the experience, helped parents to interact with their baby. Book

Attending Parent’s Circle helped families

gain perspective, feel supported, learn key developmental concepts, locate hospital and

community resources, and optimise

interaction with infant

3

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(Parent’s Circle)

45 fathers) who attended

Parent’s

Circle, + 44 NICU or

special care

nurses

birth – allows parents to tell

their story;

curriculum based on parents’ needs,

includes

development, how parents can help

baby, how baby

responds to stimuli, learning

to read subtle cues

from infant& respond

appropriately,

getting parents involved in infant

care plan, sharing

resources

list and classes were available after discharge. Staff reported that attending

the Parent’s Circle instils confidence in

parents, helps them read baby’s signals, normalises, introduces concepts such as

kangaroo care that parents then want to

try.

Bracht

1998b Canada

Cross-

sectional

To report

parent perceptions

of NICU

follow-up clinic

NICU

16 families attending

clinic

Satisfaction survey – methods

not described

Integrated

Neonatal Follow-Up Program:

comprehensive,

long-term developmental

assessments,

diagnosis & referral for

children at high

risk of developmental

delay

All families reported that they were very

satisfied with services provided by multidisciplinary team; they valued

information & support re high risk infant;

but needed more information re growth & development, nutrition needs, medical

concerns (e.g. asthma).

Continuity of care provided by clinic staff

nurses provided: support, education, written information; maintenance of rapport

developed during hospitalisation; and liaison

with community resources

3

Jarrett 1996

USA

Case series Evaluation of parent

support

programme

Neonatal unit Reported discussion Parents were trained to be

parent partners –

being taught factual

information and to be active listeners.

Trained parents

matched with new parents by infant

Parents reported feeling less anxious and less worried about their infant. The

program was meeting its goal of support

and programme provided a special relationship where parents in the NICU

could take their worries and concerns. This relationship was most often

nurtured through exchanges on the

telephone, but parents also met in the parent lounge that was set up as part of

The parent support programme has provided parents with trained partner parents reducing

parents level of anxiety and improving their

confidence with their infant.

3

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49

characteristics the parent support effort in the hospital.

New parents unanimously reported that

the most helpful thing about the program was the comfort in talking with someone

who had experienced a similar situation.

Dammers 1982

UK

Case Series To report parents’

perceptions

of support group

Neonatal unit Reported discussion Parents reported having increased knowledge and greater confidence in

caring for their infant

Parents found the support group beneficial in increasing their knowledge and confidence

3

2e) Alleviate parental stress

Author

(Year)

Country

Study

design


measure

No of cases No. of

controls


Quality

(SIGN)

Kaaresen 2006

RCT Mother-Infant Transaction Program The intervention consisted of 8 sessions shortly

before discharge and 4 home visits by specially

trained nurses focusing on the infant’s unique characteristics, temperament, and developmental

potential and the interaction between the infant

and the parents.

PSI 71 69 preterm

75 term

Early-intervention program reduces parenting stress in both mothers and fathers during the first year after a preterm birth

to a level comparable to their term peers




1+

Jotzo

2005 Germany

Cohort Psychological intervention to reduce stress at

neonatal unit (One off psychological intervention to help parents cope with stress)

Questionnaire:

Impact of events scale

(IES)

Trauma experiences

measure

25 25 Mothers in intervention group had significantly lower

traumatic impact from preterm birth (lower overall symptoms: traumatic impact I 25.2 (SD 13.9), C 37.5 (SD

19.2), mean difference 12.28 (2.74-21.82, p=0.013; lower

avoidance I 7.7 (SD 5.3), C 12.4 (SD 8.4), mean difference 4.65 (0.67-8.69), p=0.023 and hyperarousal, I

5.9 (SD 4.7), C9.5 (SD 5.7), mean difference – 3.56 (0.61 –

6.51), p=0.019; lower intrusion symptoms but not significant). Control group: 76% of mothers showed

clinically significant psychological trauma at discharge vs.

36% (p<0.01) in intervention group.

2+

Als

2003 USA



PSI (Parental

Stress Index)



Hospital 1: I= 35.7 (sd 21.3)

1++

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50

C=44.9 (sd34.2) Hospital 2: I=55.8 (sd28.8)

C=65.2 (sd27.5)

Hospital 3: I=49.0 (sd28.6) C=55.9 (sd22.5)



Cobiella

1990

USA




b) Video-tape in emotion-focussed strategies to manage anxiety

State-Trait

Anxiety

Inventory (STAI),

Depression Adjective

Checklist

(DACL)

Gp. A – 10

Gp. B - 10

10 On post-treatment follow-up both the problem-focused and

emotion-focused treatment groups were significantly less

anxious than the controls and lower levels of depression were observed for the emotion-focused group

STAI: PF-t(11)=2 71 p<0.01

EF-t2 56 p<0.02

DACL: PF – NS EF-t(12)=2 36, p<0.03

1-

Nurcombe

1984 USA



Hereford

Parent Attitude

Survey

Seashore Self Confidence

Rating Paired

Comparison Questionn-aire

37 36

Intervention group scored better on maternal adaptation

(role satisfaction, attitudes to child-rearing, self confidence) than low birth weight controls (F(3, 87), p<0.030.


Maternal satisfaction F (2,89), 4.55, p<0.013 Maternal attitude (2,89), 4.05, p<0.021



weight group (F [3,87], 3.27, p=0.025).

1+

Author

(Year)

Country

Study

design


measures


Conclusions

Sign

Macnab

1998

Canada

Cross-

sectional

Evaluation

of Journal

writing

Special care

nursery (SCN)

73 parents

Survey 6 weeks after giving

information booklet on journal

writing

Giving

information about

journal writing

32% kept a journal; 73% found it

reduced their stress; 68% used it as a

means to address the most stressful elements of the experience (most

stressful elements were the feelings

engendered by having a baby in special care & interactions with staff; the same

percentage as those talking things

through with a friend to reduce stress). Journals were used to document

Encouraging parents to keep a journal is a

constructive way to deal with SCN-related

stress.

3

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51

involvement in care (45%), record keeping (36%) and organising thoughts

(27%). All those who kept a journal

recommended it to others. Positive feelings were holding baby for the first

time; meeting & speaking with other

parents; openness and honesty of nursery staff; impression that infant was loved

and cared for. Parents said the journal

would be a record for the child for later; helped to record progress & show how

well parents coped. Parents made

suggestions that photos etc should be included in the journals.

Zeanah 1984 USA

Case reports Psycho-therapy

NICU

Interview Psychotherapy Psychotherapy helped parents accept their feelings and conflicts as common to

many NICU parents; Case conferences

helped clarify misconceptions that had arisen because of the large number of

people involved in baby’s care. When

unable to travel to unit, calls kept parents informed, enhanced participation;

consistency maintained in information

given, questions encouraged. Parents were encouraged to make tape of

themselves singing & talking to baby,

telling stories so that they could ‘be with’ her even when they were at home;

encouraged to discuss using photo of

infant. Became able to discuss disappointment about babies many

problems and anxiety about long-term

effects & involvement with babies increased.

Psychotherapy as crisis intervention, supportive and insight-orientated (awareness

that conflicts interfere with optimal parent-

infant relationship

3

2f) Preparing parents for seeing their infant the neonatal unit for the first time

Author

(Year)

Country

Study

design


measure

No of cases No. of

controls


Quality

(SIGN)

Huckaby RCT Photograph of baby given to mother to take with Bonding 20 20 Mothers with picture had significantly better scores on 1+

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1999 USA

them while baby on neonatal unit Observation Checklist

(BOCL)

Physical Examination

Observation

Checklist (PEOCL)

bonding measure than those without picture (p<0.001 for BOCL and p<0.01 on PEOCL)

Author

(Year)

Country

Study

design


measures


Conclusions

Sign

Griffin

1997

USA


tour of

neonatal unit prior to birth

if high risk

pregnancy diagnosed

NICU

10 mothers

3 fathers

Interview

Tour of NICU All parents recommended that parents

diagnosed with a high-risk pregnancy be

offered a prenatal tour of the NICU. The tour benefited parents and (a) decreased

fears, (b) inspired hope for the infant's

prognosis, (c) provided reassurance about the care in the NICU, and (d)

prepared parents for their infant's

hospitalization in the NICU

3

2g) Interventions to improve communication at the neonatal unit

Author

(Year)

Country

Study

design


measure

No of cases No. of

controls


Quality

(SIGN)

Koh 2007

Australia

RCT Recording doctors consultation Information recall

91% of mothers in the

tape group

listened to the tape (once by

day 10, twice

by four

months, and

three times by 12 months;

93 93 At 10 days and four months, mothers in the tape group recalled significantly more information about diagnosis,

treatment and outcomes than control group.

Recall at 10 days:1.35 (1.08 to 1.69) p<0.007, treatment

1.35 (1.00 to 1.84) and outcome 1.24 (1.05 to 1.47),

p<0.009 than mothers in the control group.

Recall at 4 months: diagnosis 1.27 (0.99 to 1.63) p<0.05, treatment 1.35 (1.00 to 1.84) p<0.045, and outcome 1.75

(1.27 to 2.4), p<0.004

No statistically significant differences were found between

1+

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53

range 1-10). the groups in satisfaction with conversations (10 days), postnatal depression and anxiety scores (10 days, four and

12 months), and stress about parenting (12 months).

Penticuff 2005 USA

Cohort Discussion around Infant progress chart Comprehension of infant

medical

condition and satisfaction

with

collaboration with health

professionals while baby at

neonatal unit

77 77 Intervention group had fewer unrealistic concerns (ANOVA): (4.32 (0.86) vs 8.56 (0.57), p<0.018; less

uncertainty about the infant medical condition 1.92 (0.30) vs

3.52 (0.54), p< 0.003; had less decision conflict 45.88 (2.33) vs 59.10 (2.32), p<0.001; more satisfaction with medical

decisions process 120.20 (4.07), 104.95 (4.33), p<0.012;

more satisfaction with decision input 33.44 (1.30) vs 30.05 (1.21), p<0.058.

No significant difference was reported in satisfaction of care

for the infant by HC staff, and in satisfaction with decision

made.

2++

Piecuch

1983

USA

Cohort videophone No. of calls

made to

neonatal unit while baby at

unit

17 17 Mean number of telephone calls to NICU used as proxy for

interest in newborns. Mothers with access to videophone

made more calls: (1.0 vs. 0.2, p< 0.05) when mothers hospitalised; (0.9 vs. 0.3, p<0.05) when mother discharged.

Mothers appreciated videophone; relieved at being able to

see infants; infant’s condition not as bad as they had imagined; many talked to infant even though only viewing

an image; wanted to see close-ups of hands and feet as well

as face.

2 -

Author

(Year)

Country

Study

design


measures


Conclusions

Sign

Jones et al,

2007, Australia

Qualitative To report

mothers’ and fathers’

perceptions

of effective and

ineffective

communication by nurses

in the

neonatal intensive

care unit

NICU

20 mothers and 13 fathers

Semi-structured interviews None The most frequently mentioned strategies

for effective communication were discourse management and emotional

expression, highlighting the importance

for parents of communication that is both nurturing and shares the exchange of

information as equal partners.

Parents valued communication that was

two-way and involved informal chatting

as well as more formal discussions. Parents wanted provision of information

in a reassuring and respectful way. The

Strategies mentioned for effective

communication were about shared management of the interaction and

appropriate support and reassurance by

nurses.

Mothers emphasised more being encouraged

as equal partners in the care of their infant.

3

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(NICU) environment

study highlights that not only do parents simply want lots of information they also

want consistent information.

Freer, 2005,

Scotland

Case study To report on

Babylink (an

individual website

approach to

sharing information

with parents)

NICU Descriptive reports from

parents

Babylink

individual website

information

Parents reported the benefits of having

access to information on their baby on a

daily basis. BabyLink has been beneficial to families in communicating

complex information and humanising the

experience of neonatal intensive care.

An efficient means of keeping parents

informed about the care and progress of their

babies being cared for in the hospital’s neonatal unit

3

Fenwick,

2001,

Australia

Qualitative To

Gain a

greater understandin

g of the

woman's experience

of mothering

in the nursery

and how

nurses' social interaction

and verbal

exchanges impacted on

this

experience

Special care

nursery

28 women The average

age

of the women was 28 years

(range 19±41)

15 gave birth at 30

weeks or less.

Semi-structured interviews None Nurses engaging in such ‘chatting’

resulted in the development of

relationships that were reciprocal and interdependent rather than undesirable or

difficult to achieve. Mothers described

this as personal, and forming friendships.

While women commented that all the

facilitative behaviours were important, nurses who `chatted' in this way were

singled out particularly as

those that truly made a difference to their nursery experience.

It was these nurses that all the women in the study

identified as the people who `most'

facilitated their efforts to learn and take up their role as mothers, feel in control of

the situation and, ultimately, assisted

them in developing a connected relationship with their infants.

The results of this study relate to the

importance of the shared `social' interactions

between mother and nurse and the role these played in developing `personal' and `equal'

relationships. This allowed the nurse to enter

the woman's world and to facilitate their access to psychosocial information that

assisted them in validating the woman's

experiences, and helped them to plan individualized care that met the needs of the

infant, mother and family

3

Koh 1998 Australia

Cross-sectional

To evaluate tape-

recording

doctor-patient

communicati

on

NICU 80 parents of

babies

admitted to NICU

Questionnaire Tape recording initial

conversation

between parents and neonatologist

(covering baby’s

condition,

Parent response rate=76% (75/99). Mothers listened to the tape on average

2.5 times, Fathers listened to the tape on

average 1.8 times; tape usefulness rated as 9 (SD: 7-10) by parents. 85% (44/75)

of parents who listened to the tapes again

found it contained things they had

The tape recording of parent-doctor consultations was useful to parents,

particularly in reminding them of information

they had forgotten or not heard due to anxiety or sedation during the consultation.

3

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management, likely progress

and outcome) and

subsequent important

conversations and

giving parents the tapes

forgotten – some mothers who had been sedated had forgotten the conversation

had taken place. Relatives were also able

to listen to tape & saved parents repeating what doctor had said. Parents

found tapes comforting & supportive. No

negative comments.

2h) Interventions to improve information needs of parents

Author

(Year)

Country

Study

design

Intervention Outcome measure No of cases No. of

controls


Quality

(SIGN)

Brown 1994 USA

Quasi experimen

tal

Booklet, videotape and practical session. for parents of broncho-pulmonary dysplasia

discharged from tertiary care centre.

Education on physical characteristics of infants on continuous low-flow oxygen & their care.

Psychosocial development of infant, parental

needs, oxygen equipment, CPR in NICU

Pre-test Post-test study

Pre-test of

knowledge immediately before

and post-test

immediately after programme; post-

test repeated 6

weeks after discharge

18 primary caregivers of

10 infants

Post-test scores (immediate mean = 17.33 [SD 3.91]; delayed 17.17 [4.41]) significantly higher than pretest scores (14.38 [3.72], p<0.01)

2+

Author

(Year)

Country

Study

design


measures


Conclusions

Sign

Kowalski 2006,

Cross-sectional

To determine what

information

is wanted, who

provides

information and what

expectations parents have

regarding

obtaining information.

Neonatal unit A 19-item questionnaire was given to the parents of

infants 32 weeks or younger

prior to discharge from the NICU.

None Out of the 101 parents who consented, almost all of the parents (96%) felt that

‘the medical team gave them the

information they needed about their baby’ and that the

‘neonatologist did a good job of

communicating’ with them (91%). However, the nurse was chosen as ‘the

person who spent the most time explaining the baby’s condition’, ‘the

best source of information,’ and the

person who told them ‘about important changes in their baby’s condition’

Although the neonatologist’s role in parent education is satisfactory, the parents

identified the nurses as the primary source of

information.

3

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Gannon 2000 USA

Case series To evaluate ‘Caring one

day at a

time’ book

NICU 5 pilot families

Survey

‘Caring one day at a time’ book –

three-ring binder

book to organise information about

child’s medical,

developmental and financial

records from birth

until adolescence and beyond

Allows parents to keep all information together, speeding up process when they

have to see a new doctor for example &

giving parents more confidence; allows parent to see child’s progress (giving

hope); allows new professionals to see

history/ current status/ current medication etc written down

This family-centred approach with early involvement of families in child’s care;

enhances communication between families

and professionals

3

Costello 1998

Canada

Qualitative To assess mothers’

perceptions

of Care by Parent

programme

NICU and Level II

nursery

6 mothers of preterm infants

Interviews the day after Care by Parent overnight stay in

hospital, and when baby home

at least 4 days

Care by Parent programme –

mother stays with

baby in room near NICU – assumes

all care but help at

hand if needed.

Mothers found Care by Parent reassuring to confirm their own and the baby’s

readiness for discharge; builds

confidence in mother’s parenting abilities; feeling more comfortable about

bringing baby home; feeling confident in

taking responsibility, making the right decisions; feeling more secure that

mother would wake when baby cried &

be able to respond; reassured that baby medically ready to go home (e.g. not

having apnoea spells). Helped mothers

learn about infant’s pattern of behaviour & responses to infant’s cues. Fail-safe

opportunity; taking responsibility with a

safety net. Opportunity to ‘test reality’ of parenting – feeling more as though the

baby belonged to the mother not the

nurses; facilitates transition to parenthood in reality; bridges gap

between hospital and home.

Care by Parent gave mothers opportunity to assume full responsibility for baby’s care

knowing that staff available if necessary. It

helped mothers learn caregiving and confirm readiness for discharge.

3

Drake 1995

USA

To assess a

method of

prioritising information

needs of

parents for discharge

NICU

Pilot study of

10 parents

Q-sort – ranking of topics in

order of priority to parents for

learning prior to discharge; feedback on how easy Q-sort

was to complete

Card sort method

of prioritising

teaching/learning topics that parents

need prior to

discharge

Parents sorted 14 topics into most

important, important, and least important

piles and had opportunity to add in 3 other topics they wanted. Parents’

highest priorities were infant CPR,

illness and development, with feeding, giving medication & hygiene issues

medium priority and use of car seat &

getting help at home low priorities.

Parents are the best sources to assess their

learning needs, and addressing topics parents

feel are important helps teaching and learning, especially if nurse does not know

family well.

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Parents and nurses found it helpful to assess what parents needed to know –

better than closed questions to parents

like ‘Do you know how to give the baby a bath?’ which can be threatening

2i) Discharge planning

Author

(Year)

Country

Study

design


measure

No of cases No. of

controls


Quality

(SIGN)

Ortenstrand

2001 Sweden


Domiciliary nurse made an individual care and discharge plan together with the parents. During

these planning sessions, parent’s knowledge of

how to care for their pre-term infant were checked and supplemented. The nurse was available for

home visit/ telephone consultation from Monday

to Friday, and at weekends parents could contact the neonatal ward

STAI 40 35 No differences in mothers’ Trait anxiety at 1st or 2nd

assessment. State (situational) anxiety lower for EDG mothers at 1st assessment (EDG 30.9 [SD 6.2] vs. CG 36.6

[8.4], p<0.01.

Fathers showed a significant difference in trait anxiety at

both 1st and 2nd study time period (30.1 (5.8) vs 33.5 (7.7),

p<0.05, but only a significant difference in state anxiety at the 1st assessment (29.5 [5.4] vs32.8 [9.1], p<0.08.

At 1 yr, no difference in recollection of anxiety in caring for the infant or in experiences of mental imbalance related to

the birth of the infant

2+

Barrera 1986

Canada

RCT Teaching developmental care HOME Parent-infant

interactions

40 40 At 4 mths and 16 mths, mothers in the Parent-Infant intervention group and full term control group were

significantly better maternal responsiveness and mother-

infant interaction compared to the pre-term baby control group.

Manova: Maternal rseponsiveness

I-7.32, FTC – 7.44, C- 6.41, f=6.78, p<0.001 Maternal involvement:

I=7.23, FTC-7.16, C-6.26, f=2.70, p<0.05

1-

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Author

(Year)

Country

Study

design


measures


Conclusions

Sign

Broedsgaard

2005 Denmark

Qualitative To present

the parents’ experiences

of an educational

programme

NICU

37 families with premature

infants (<34 weeks)

Descriptive study

Semi-structured interviews and

focus groups

Educational

programme (topic group discussions)

for parents during hospitalisation;

health visitor

coordinator on NICU; visit and

orientation about

NICU for family’s health visitor;

multidisciplinary

discharge conference;

booklets for

parents and health care providers;

parents’ evenings

once a month after discharge

Families valued support and guidance

from coordinator; having named contact nurse throughout child’s stay; continuity

of care; felt secure when they went home; NICU personnel and own health

visitor collaborated well. They received

extra visits from health visitor (most 4-6 extra but some >7 extra) in the first year

and this was in accordance with their

needs. Frustrated that mothers were on postnatal ward with mothers of full-term

infants but they were separated from

their infants (NICU on another floor). Felt that their needs not met in maternity

unit. Felt assisted and reassured in

NICU; the parents needed special care to tackle their situation and needed lots of

information (repeated several times, plus

written materials to reinforce). Discharge was time of anxiety; shock; needed to

adjust; return home helped by meeting

health visitor on NICU; 3-4 days rooming-in on NICU helped preparing to

return home.

Intervention increased support, contributed to

confidence in caring for infant and infant well-being after discharge.

3

Bennett 2005 UK

Qualitative Evaluation of Rooming

in (care by

parent)

NICU

Interview Rooming in (care by parent)

Most found it an extremely positive experience (scared but realised the

opportunity to know each other more,

feel a bit more in charge; promoting breastfeeding, increased bonding &

confidence to take baby home).

Most mothers reported ‘rooming in’ to be a useful, informative time

3

Jonsson

2003

Qualitative To report on

an early

NICU

23 parents (17

Interviews Home care

programme –

Becoming a family: do not feel like a

family in NICU; shared infant with staff;

Parents wanted to come home earlier to feel

like a family, but wanted security of access to

3

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Sweden discharge & home care

programme

women + 6 men) of babies

on home care

programme

home visits at parent request (1

day-1 week apart);

counselling & supervision

feeling gradually disappeared when they went home.

Being at home: nervous; less conflict

between being with infant in hospital and being with other children at home

Being reunited as a family; not having to

share baby with others Feeling security: important for parents to

have access to information and advice:

checked with checklist with the neonatal nurses; had questions when they got

home

Needed accessibility, usually by telephone, with home care team

Needed support from health care

professionals and relatives

staff knowledge & support

Costello

1998 Canada

To assess

mothers’ perceptions

of Care by

Parent programme

NICU and

Level II nursery

6 mothers of

preterm infants

Interviews the day after Care

by Parent overnight stay in hospital, and when baby home

at least 4 days

Care by Parent

programme – mother stays with

baby in room near

NICU – assumes all care but help at

hand if needed.

Mothers found Care by Parent reassuring

to confirm their own and the baby’s readiness for discharge; builds

confidence in mother’s parenting

abilities; feeling more comfortable about bringing baby home; feeling confident in

taking responsibility, making the right

decisions; feeling more secure that mother would wake when baby cried &

be able to respond; reassured that baby

medically ready to go home (e.g. not having apnoea spells). Helped mothers

learn about infant’s pattern of behaviour

& responses to infant’s cues. Fail-safe opportunity; taking responsibility with a

safety net. Opportunity to ‘test reality’ of

parenting – feeling more as though the baby belonged to the mother not the

nurses; facilitates transition to

parenthood in reality; bridges gap between hospital and home.

Care by Parent gave mothers opportunity to

assume full responsibility for baby’s care knowing that staff available if necessary. It

helped mothers learn caregiving and confirm

readiness for discharge.

3

2j) Home Support Programmes

Author

(Year)

Study

design


measure

No of cases No. of

controls


Quality

(SIGN)

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Country

Kurz 2002 Austria

Cohort Home support (Phone call and counselling of parents after returning home) for parents of babies

with monitors

Questionnaire about monitor

use, stress

reported by monitor use,

and

satisfaction

90 70 Home monitoring considered reassuring for 60% of families. After intensive counselling introduced, parents liked the

instruction better (74% vs. 44% very satisfied; 24% vs. 51%

satisfied; 2% vs. 5% not satisfied, p<0.005)), were less stressed by the monitor (42% vs. 63% stressed by false

alarms, p<0.05) and reacted less aggressively to monitor

alarms (8% vs. 24% reacted by vigorously shaking or lifting baby, p<0.05); used monitor mainly during sleeping periods;

used monitor for less time (6.1 months vs. 7.6 months,

p<0.05). Counselling did not reduce anxiety.

2+

Spiker

1993 USA

RCT Home Support

(Infant Health and Development Program (IHDP) – Home visits from discharge up to 36

months

Quality of

assistance in parenting pre-

term baby

Supportive presence for

parents of pre-

term infants

271 412 Intervention group reported significantly better quality of

assistance ratings than control group (I: 3.6 [1.5], vs 3.3[1.5], p<0.05), but no significant difference on supportive

presence was reported. Most outcomes in this study were

baby outcomes.

1-

Leonard

1989

USA

Cohort Educational support programme for infants on

home monitors (Infant Apnea Evaluation

Programmes (IAEP)L Gp1 – with home monitoring



Symptom

checklist-90,

schedule of recent events,

satisfaction -

all in interview 2

wks after

going home

Gp1-40 Gp 2- 30

Gp3 - 32

Psychological symptoms highest in parents of non-

monitored premature infants (M - 0.2845 [0 – 0.82] vs , NM

– 0.4507 [0-1.3], p=0.037 ); particularly fathers of non-monitored infants scoring high on depression (0.6846)).

Support highest in monitored infants (p=0.005) NS on family satisfaction

.

2+

Resnick

1988 USA

Cohort Educational developmental Intervention

Programme at home – teach parents to use:

parent’s voice tape, massage, passive range of motion, exercises) and twice-monthly

interventions at home by child development

specialists through 12 months adjusted age (e.g. language and social skills enrichment exercises,

cognitive development, motor exercises, parenting

activities)

Greenspan-

Lieberman

Observations System

(GLOS) to

analyse infant-caregiver

interactions at

6 and 12 months

21 20 Parent child positive verbal scores significantly higher in

treatment than control groups (2.91 vs. 2.08), p=0.02.

Intervention group dyads had fewer negative verbal interactions (0.07 vs. 0.17, p=0.03).

The developmental intervention benefited the quality of the parent-infant interaction at home, as well as benefiting the

infant development.

2-

Ross

1984 USA

Cohort Teaching developmental care at home to lower

socio-economic parents

HOME

Maternal Attitudes

Scale

44 40 Intervention group reported significantly higher HOME

scores (total score 38.4 vs. 34.9, p<0.001). No other significant differences reported

2+

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61

Maternal developmental

Expectations

and child rearing

attitudes

survey Baby

outcomes (not

reported here)

Author

(Year)

Country

Study

design


measures


Conclusions

Sign

Langley

1999 UK

Cross-

sectional study

To evaluate a

home support -

Community

Neonatal Service

Home


this study

Home support

programme

Families reported feeling supported, and

appreciated continuity of care after discharge. This benefit was reported

more in vulnerable parents (isolated

mothers, mothers with babies who had sleeping, crying or feeding problems).

Community Neonatal Service provided

important support to families where mothers are vulnerable, or where infant has

difficulties.

3

Swanson

1997 USA


of neonatal integrated

home care

program

NICU/ home Descriptive Neonatal

integrated Home Care Program –

follow up care to

high risk neonates at home, teaching

re specific infant

care needs (e.g. feeding)

Program made it possible to bring home

baby, nurse provided help, support, instruction & encouragement (e.g. with

nasogastric feeding tube)

Families supported to take high risk infants

home sooner, ease transition from NICU to home & keep them home (i.e. reduce

readmissions)

3

Isaacs 1980

USA


of newborn Intensive

Care

Coordinator

Home

40 families of high-risk

infants

discharged from NICU

Questionnaire Home visits for

teaching, guidance and support

More than 2/3 parents felt concerned

about infant discharge and had anxiety about caring for infant at home. All

families strongly agreed that the

coordinator made families feel completely comfortable, they had

complete trust in her, she was available,

she gave emotional support, felt they could discuss fear & worries with her,

and helped them mother infant. Teaching

gave support, confidence & necessary skills.

Coordinator met the needs of parents 3

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TITLE

Title 1 Identify the report as a systematic review, meta-analysis, or both. 1

ABSTRACT

Structured summary 2 Provide a structured summary including, as applicable: background; objectives; data sources; study eligibility criteria, participants, and interventions; study appraisal and synthesis methods; results; limitations; conclusions and implications of key findings; systematic review registration number.

2,3,4,5

INTRODUCTION

Rationale 3 Describe the rationale for the review in the context of what is already known. 6

Objectives 4 Provide an explicit statement of questions being addressed with reference to participants, interventions, comparisons, outcomes, and study design (PICOS).

6

METHODS

Protocol and registration 5 Indicate if a review protocol exists, if and where it can be accessed (e.g., Web address), and, if available, provide registration information including registration number.

www.poppy-project.org.uk

Eligibility criteria 6 Specify study characteristics (e.g., PICOS, length of follow-up) and report characteristics (e.g., years considered,

language, publication status) used as criteria for eligibility, giving rationale. 7

Information sources 7 Describe all information sources (e.g., databases with dates of coverage, contact with study authors to identify additional studies) in the search and date last searched.

7

Search 8 Present full electronic search strategy for at least one database, including any limits used, such that it could be repeated.

Appendix 1

Study selection 9 State the process for selecting studies (i.e., screening, eligibility, included in systematic review, and, if applicable, included in the meta-analysis).

7

Data collection process 10 Describe method of data extraction from reports (e.g., piloted forms, independently, in duplicate) and any processes for obtaining and confirming data from investigators.

7

Data items 11 List and define all variables for which data were sought (e.g., PICOS, funding sources) and any assumptions and simplifications made.

7

Risk of bias in individual studies

12 Describe methods used for assessing risk of bias of individual studies (including specification of whether this was done at the study or outcome level), and how this information is to be used in any data synthesis.

N/A Few quantitative studies

Summary measures 13 State the principal summary measures (e.g., risk ratio, difference in means). N/A Few quantitative

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studies

Synthesis of results 14 Describe the methods of handling data and combining results of studies, if done, including measures of consistency (e.g., I

2) for each meta-analysis.

7

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Risk of bias across studies 15 Specify any assessment of risk of bias that may affect the cumulative evidence (e.g., publication bias, selective reporting within studies).

Additional analyses 16 Describe methods of additional analyses (e.g., sensitivity or subgroup analyses, meta-regression), if done, indicating which were pre-specified.

Few quantitative studies

RESULTS

Study selection 17 Give numbers of studies screened, assessed for eligibility, and included in the review, with reasons for exclusions at each stage, ideally with a flow diagram.

8

Study characteristics 18 For each study, present characteristics for which data were extracted (e.g., study size, PICOS, follow-up period) and provide the citations.

Table 1

Risk of bias within studies 19 Present data on risk of bias of each study and, if available, any outcome level assessment (see item 12). Discussed in limitations

Results of individual studies 20 For all outcomes considered (benefits or harms), present, for each study: (a) simple summary data for each intervention group (b) effect estimates and confidence intervals, ideally with a forest plot.

18-31

Synthesis of results 21 Present results of each meta-analysis done, including confidence intervals and measures of consistency. N/A Non-quantitative analysis performed

Risk of bias across studies 22 Present results of any assessment of risk of bias across studies (see Item 15). N/A

Additional analysis 23 Give results of additional analyses, if done (e.g., sensitivity or subgroup analyses, meta-regression [see Item 16]). N/A

DISCUSSION

Summary of evidence 24 Summarize the main findings including the strength of evidence for each main outcome; consider their relevance to key groups (e.g., healthcare providers, users, and policy makers).

30-32

Limitations 25 Discuss limitations at study and outcome level (e.g., risk of bias), and at review-level (e.g., incomplete retrieval of identified research, reporting bias).

31

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Conclusions 26 Provide a general interpretation of the results in the context of other evidence, and implications for future research. 32

FUNDING

Funding 27 Describe sources of funding for the systematic review and other support (e.g., supply of data); role of funders for the systematic review.

Big Lottery

From: Moher D, Liberati A, Tetzlaff J, Altman DG, The PRISMA Group (2009). Preferred Reporting Items for Systematic Reviews and Meta-Analyses: The PRISMA Statement. PLoS Med 6(6): e1000097. doi:10.1371/journal.pmed1000097

For more information, visit: www.prisma-statement.org.

Page 2 of 2

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Family-centred care at the Neonatal Unit

Support Groups

�Parent lead (buddy parent programme)(2++)�Nurse lead (3)

Care for babies�Kangaroo care (1+)�Baby massage (1+)�Breast feeding (3)

(ie to improve confidence and competence in caring and bonding with baby)

Stress Education Programme�COPE (Creating opportunities for Parent empowerment) (1+)�NIDCAP (Neonatal individualised Developmental Care

and Assessment Programme) (1+)�Mother – Infant Transaction Programme (1+)�Video tape training: active problem solving focussed coping strategy (1+)

�One off stress reduction programme (2+)Journal Writing (3)

Improve Communication

� Record consultations with doctors (or provide results in writing) (1++)

� Involve Parents in discussions aroundInfant Progress Chart (2++)

� Video-phone link to unit (2-)� Baby Link – website information –general and specific to parents (3)

Individualised developmental and care Programmes�COPE (Creating opportunities for Parent empowerment)(1+)�NIDCAP (Neonatal individualised Developmental Care

and Assessment Programme) (1+)�Mother – Infant Transaction Programme (1+)

Discharge

Discharge Planning(Reduce stress of returning home, improve parentimprove home environment for baby)

1. Parent (to improve parent interactions and improve the home environment) (1+)

2. Educational programme for Parents; visit and orientation from a Health Visitor linked to the unit; multidisciplinary and crossconference; provision of appropriate booklets / leaflets for Parents. (3)

3. Early discharge with domiciliary nursing (2+)

4. Care by Parent discharge programme stay overnight with their infant in the same room and assumes all care for the baby, but help is available if needed. (3)

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bmj openfor peer review only 2 abstract background and objective: the birth of a pre-term infant can...

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